Words can’t even begin how this organization not only help my child,but helped me. This organization connected me to a world full of mommies that related to my situation. No one in my family has ever heard of Laryngomalacia and to feel so lost until I came across this organization. They sent the most meaningful care package that brought me to tears. This momma needed this organization & I am beyond grateful for them everyday. My son is now a thriving 11 month old
I am the daughter of Stephanie, Coping with Laryngomalacia's founder, and I can honestly say this organization has truly changed lives. All the volunteers work so hard to make sure every baby in need is able to receive a care package with a soft blanket, stuffed animal, and other things that will bring comfort while in the hospital. Coping with Laryngomalacia is a very inspiring nonprofit.
From day 3 of life I noticed my son was struggling with feeding, sleeping and was the noisiest baby ever! His struggle continued until we finally got a diagnosis at 15 months old- Laryngomalacia! This nonprofit is amazing support for caregivers dealing with unknowns and scared to death!
Both my 2 little ones were born with laryngomalacia and thank you to the Facebook group we have been very lucky to get support and my boy got a wonderful care package I can’t thank you enough for all the support to get through this
Hello my name is Jess I am Lilybeths mom she’s currently 6m old dealing with laryngomalacia & traechomalacia .
It’s been a long journey for us, many hospital stays + many referrals.
I discovered coping with laryngomalacia when we were admitted at the hospital for failure to thrive . A speech therapist came while we were admitted to assist lilybeth , she then proceeded to tell me about her daughter having LM when she was a baby and showed me this group.
I was so amazed at all the information I was able to read on this page it also made me feel not so alone knowing and seeing other babies with LM .
I messaged to get more information as we found out she had traechomalacia during her Supra surgery as it was a whole new diagnosis that I knew nothing about , thanks to this page I was able to learn more + educate my self to be able to help my baby .
We received a care package & it meant so much to us .
The support you guys give us parents is beyond everything and means so much to me . Thank you for being an amazing / informative page !
You guys are awesome .
I found this organization when my second son was diagnosed at 3 weeks old. Being part of a group of parents who are riding the same roller coaster of parenthood has been so helpful, not only in hearing all the success stories, but seeing the good and the bad, learning what is crucial and the right questions to ask, seeing experience with other professionals, and overall not feeling alone in the journey. Coping with LM sent each of my boys (my 7 year old has Bronchomalacia and my 2 year old has Laryngomalacia) beautiful care packages and my younger son also received an adorable Rare bear. We are so thankful for such an amazing organization! Thank you for everything!!
After almost a year of going back in forth with doctors saying something just wasn’t right. We finally got one doctor at our pediatrician that took the time to listen and address our concerns. We got lucky and got an appointment with our ENT the same day and had a MLB scheduled. Up until one month ago (his surgery date) I had never heard of tracheomalacia. After doing some research on it at home I found this charity and got his care package. I now have a support group that not only educated me on his condition but a group of parents who can relate. This has been everything, I now know what options are available to my son and know what to questions to ask his doctor at his next appointment. Also the smile on his face when receiving his care package was everything, please consider donating to this great nonprofit!
Coping with LM is such a great nonprofit! They sent my son a sweet care package before his supraglottoplasty and it was a very bright spot in our week. So thankful for the work they do for our family and so many others!
My child was diagnosed with Laryngomalacia and a laryngeal cleft. I've followed the group on Facebook and recently applied and received a care package for my little to help support during and after surgery. Thank you so much !
Hearing the words Laryngomalacia, Tracheomalacia, and Bronchomalacia was very overwhelming. Words I had never heard before.. finding Coping With Laryngomalacia on Facebook was the greatest thing for our family. It not only gave me so much knowledge, but connected me with parents who could share their stories and promoted me to bring up the right question at appointments to get my son the proper treatment. I couldn’t be more thankful for this organization. And the beautiful package they sent was so heartwarming and sweet. I will forever be grateful for this organization and community. Thank you for all that you do. Thank you for providing my son with a voice. Thank you for teaching me to use my voice, even when it shakes.
When I had no where to turn for answers and guidance, there was this wonderful group on fb. I will never forget asking if there was a light at the end of the tunnel. Everyone jumped on in the comments telling me yes and keep moving forward. This was in 2014. Here we are 10 years and I can say YES, there is one.
This group is Amazing
My daughter needed surgery back in 2019 when she was just 3 months old. We literally were called the night before by our ENT himself to let us know they had a bed in ICU for the next day and we are to come the next day for her surgery. So many emotions went through us. The care package some how made is easier. The surgery was a huge success and she is now 4 years old. Last December (2022) she was diagnosed with Tracheomalacia and Bronchomalacia during a bronchoscope by her Respirologist and her ENT. Somehow getting Trey and Bri for her made these diagnoses easier. We also learnt of her Type 1 laryngeal cleft and are now again on a wait list for surgery. Coping with LM will always hold a special place in our home and lives.
We have been fighting to get our son the proper care he needs and the support of Coping with Laryngomalacia has given me the tools I've needed to get the doctors to listen to me. It has also given me the confidence to keep going back to ensure my child is getting proper treatment.
After we finally had our surgery scheduled we ordered a care package for our little man, it was recieved 4 days after ordering and he loves it! I am very excited that he has Lu the Lamb and a special handmade blanket to bring with him to the hospital and there's a care package for me as the parent as well.
If I could give this nonprofit a million stars I would. Not only did they take great care of making sure my baby got his care package they sent it out fast enough to ensure we would get it prior to his emergency surgery. They also not only made sure baby boy had stuff but there was some goodies for mom as well. Thank you so much coping with LM
Our baby girl was diagnosed at six weeks old we spent the better part of a month through three admissions in three months before we saw any improvement! We traveled close to five hours nearly 12 times in her first year to get specialist care because there isn’t enough education for providers nearby and my daughter wasn’t getting better. She has been through 3 surgeries including two Supras, and a G-tube she’s been scoped more than a dozen times. She was on CPAP for many months, but through it all is a fighter. She is now 15 months old and running everywhere. This organization gave us the home to advocate for our daughter and someone to share our fears, questions and concerns with a community of people that knew exactly how we felt. This was during the hardest period of our life, we had others that knew what to say, and not make us feel so alone! It took almost year of tube feeds for failure to thrive before we saw improvement and several months of ongoing PT/OT and feeding therapy. Now our daughter is finally eating,breathing and playing and being the kid we always dream she could be. She is not perfect but the majority of her noisy now is her yelling for fruit. But I knew we couldn’t of done it without finding this organization that showed us how to fight through it with her. She is stronger than stridor. #toughliketorry
This is Storm!
She is 10 weeks old and has laryngomalacia. We've had a few lengthy hospital admission and a few procedures already. It's been very scary seeing her so unwell and very isolating too. LM isn't very well known so it's just incredible to have to have this organisation to provide support and offer some hope. Storm is very happy with her care package which has arrived just in time for her 5th sleep study! Thank you so much coping with laryngomalacia!
We are also located in Australia and have been on this journey three times now. So in total 5yrs of following this page for emotional support- in knowing that we are not alone. It can be a silent and isolating battle.. trying to feed a baby with an airway disorder. Ours has been Laryngomalacia. Both my boys had Supraglottalplasty surgery done. Our little 11 week daughter Millicent will be going in for surgery on the 9th June 2023. She will be our youngest child that goes in for surgery. The others were 9mo and 12mo. Feeding a child with airway malacia is a huge challenge.. we hope that things improve after the surgery as each feed is a real struggle and feeling of helplessness. We are praying that the surgery is straight forward and gives us the help that we need. Thank you for providing a page that supports these challenging times!!
This organization has brought us so much joy on rough days & has been so helpful for me as a momma who doesn’t know too much about this diagnosis. My sweet girl has a GTube & we received a pair of medical pjs that are our FAVORITE and so convenient! So thankful to have found this organization!
This is Declan! He was born premature at 35 weeks. Since birth he has been hospitalized twice with viral infections. We were in the doctors office every week for the first 10 weeks of his life trying to get answers for why his breathing was so labored, he had constant retractions, stridor and pauses in breathing.
We were told he had noisy breathing, congestion, and it was normal for preemies to sometimes have pauses in breathing. Through my own research of his symptoms I suggested that he may have laryngomalacia to his pediatrician & asked for a referral to an ENT who did a flexible laryngoscopy to confirm his diagnosis of moderate laryngomalacia. 3 weeks later his breathing became worse and we were told he needed to have a laryngoscopy/bronchoscopy under general anesthesia. I reached out to Coping with laryngomalacia and applied for their care basket for his upcoming surgery and they overnighted it us so it would be there just in time for his surgery.
While under they performed a supraglottoplasty and additionally diagnosed him with mild tracheomalacia and a bifid uvula. He is now home and recovering and doing sooo much better. I want to thank CLM for their support, care package, resources, and all of the amazing work they do to support airway disorders.
During a long and difficult journey to get our son diagnosed in Australia, Coping with LM have been a wealth of support with their social media accounts and groups.
Our son got a gorgeous package when he was hospitalised for his surgery and it really lit us all up during this hard time
So thankful that I found coping with Laryngomalacia when I did. I was in the trenches of PPD, PPA& dealing with medical trauma and finding them was the first time I felt like I wasn’t alone. It was the care package and the letters inside that made me really understand and accept that things were different but that I was going to be okay. I had finally found my safe place to talk to other parents that understood& learn more about my sons conditions. Forever thankful for CWL! I can now say that I am in active treatment for PPD, PPA& medical trauma and I feel so much better but I couldn’t have gotten here without having such a great organization provide support and knowledge to empower me.
Below is a picture of the care package we received! It helped me just as much as my son. I found so much comfort in the fact that they cared.
From the bottom of our hearts, my husband and I would like to thank Coping with LM for the incredibly thoughtful care package they sent for our son. In December he had his second MLB, Laryngeal Cleft repair and Supraglottoplasty. The Coping with LM website and blog posts educated us, guided us, and helped give us the courage to keep pushing for answers. He loved the toys, books, blanket and especially Lu the lamb. Thank you again for all that you do! It means more than you know.
I am forever grateful for Stephanie & CWL! When my baby first got his diagnosis at three weeks old, I was very nervous about what was to come for him. The CWL community has been so helpful and supportive through our darkest, loneliest days on this journey.
My boy was so lucky to receive a beautiful care package just in time for his surgery. I had tears opening it & knowing there was a world of support right behind us.
Hello this is Amaziah and he is 3 years old. When he was 2 months old he was diagnosed with laryngomalacia after tons of hospital visit and doctor appointments. I applied for this care package because he had 2 procedures done recently and this care package helped him a ton!! Thank you all so much for your donation and all you do. You are all seriously a huge blessing for all these families and little ones!!
Without Stephanie and all of these amazing volunteers, I would be so lost. I was a wreck when I stumbled upon this organization while my three week old went under for emergency surgery. I found a community, a support system, and encouragement in some of my darkest moments. The care package we received was unexpected and was such a blessing. Our little warrior will be three and she still loves her Lu
When I took Khari into a follow up appointment with a specialist on March 15, 2022, I never expected his outcome to be admitted, to receive a feeding tube to be told if I had not followed up and brought him when I did my son would have pneumonia, khari is what they call a silent aspirator, which means when he drinks from a bottle instead of going into his stomach it goes into his lungs and it’s silent meaning there’s no indication of this unless through a x-ray. It’s always hard to hear that your child has something different than what is normal and scary because he’s so little and it affects his breathing, after many prayers and tears I made sure I did my research and found there are many other babies out there just like Khari some with different symptoms associated and some with different outcomes. I came across this support page for Laryngomalacia applied for it and continued to look further into it, they quickly got back to me and offered support and this morning I received this care package for Khari to help comfort him for his upcoming surgery I know God has him of course that doesn’t stop my tears from flowing knowing my little baby will have to undergo a procedure and I won’t be there if he cries out, but I’ll be right there waiting for him with endless cuddles and kisses, it’s definitely the littlest things that matter the most and have the most impact ‼️ #laryngomalacia I’m not crying you are
The community Stephanie & her volunteers have built has helped my family through the last 4 years and 3 difficult airway kiddos. There is always someone willing to chat & be a friend even from across the country. The thought & care that goes into the advocacy materials & care packages is felt ten-fold by the caregivers to these brave & amazing kiddos. I cannot thank Stephanie, her volunteers & Coping with Laryngomalacia enough for all they have helped us & many others through!
Like most parents, even experienced parents like ourselves having 2 other young children at home, we were not even aware of the existence of laryngomalacia. So when our youngest was born wheezing and noisy we believed hospital staff when they said he had just not cleared his lungs of fluids from birth. Well, after being discharged from the hospital and the noisy breathing not going away we took him to see his pediatrician. They gave us all the run of the mill answers like, "you're just feeding him to much" "he's just congested" and the ever so popular "it's just noisy breathing, it'll go away" unfortunately it didn't just go away. We spent the next few months fighting tooth and nail sometimes feeling like we were arguing with a brick wall trying to get someone to listen to us until finally our pediatrician gave us the referral we were so desperately looking for. David J. Crockett, MD, we didn't know it the first time we showed up to his office in Mesa, AZ but that name would soon become synonymous with names like Captain America, and Iron Man. While he wore a white medical coat and not a brightly colored super suit, Dr. Crockett became a superhero to us moreso than those in Marvel and DC comics ever could. We weren't in the office long before we were called back. Within minutes of walking in and checking on our Ruben James, Dr. Crockett knew the diagnosis, laryngomalacia. He told us that our son had a moderate to severe case and was a potential candidate for a procedure called supraglottoplasty surgery or a surgical procedure to alter malformed structures of the upper larynx. Now i dont fault our pediatrician for not being able to diagnose him, he is the first patient she's ever had with the airway disorder. Actually she's the one who helped us jump through the hoops to get the referral. Now that we finally had a diagnosis though, it was time to game plan and learn about our new foe. In steps Stephanie and Coping with Laryngomalacia. We found the group on facebook and immediately we were enamored with the page. Parents giving advice, and telling theirs and their loved one's stories, inspirational thoughts from the mind of Stephanie, the founder of CWL, and so much more. We even received a care package from them, filled to the brim with items that would help comfort our son and ourselves. You could feel how passionate these airway advocates were about helping to not only teach others about LM but also how much they cared and wanted to help ease the minds of those they spoke with. After asking what seemed to be a million questions, some more than once, for the first time since the diagnosis our minds had a chance to relax. With our new found knowledge and the most amazing support system by our side we met with Dr. Crockett again, this time to schedule what would be our LM warrior's first surgery. November 22, 2019, no matter how much you prepare yourself, and how ready you think you are, you could never prepare yourself enough to feel comfortable when you see your four month old son laying on the hospital bed in his tiny yellow surgery gown. Our little stud muffin was a hit, smiling and laughing with every nurse and Dr who would come in to talk with us. First his main nurse, then the anesthesiologist, then Dr Crockett, with a smattering of other nurses and hospital staff sprinkled in between. He smiled and played until he was taken to the back and out of our sight. The surgery only took about 20 minutes but it felt like we lived 100 lifetimes waiting to see "surgery complete" next to his name on the surgery board in the waiting room. A wave of relief wash over us when those words finally flashed before us. Our beautiful boy was still under the effects of the anesthesia so Dr. Crockett took this time to pull us aside and explain the process. "Ruben has what is called an omega shaped epiglottis" he told us. He continued on explaining that he removed just a bit of the excess tissue from the epiglottis, that tissue is what was folding over blocking his airway and causing the wheezing sound we heard when he would breathe. We thanked Dr. Crockett for being so amazing with us and taking his time to explain everything to us but the only thing in our minds was getting to our son as quickly as possible. When he finally awoke from his anesthesia fueled slumber we took turns holding him and feeding him neither of us wanted to leave his side, and truthfully outside of a few brief instances neither of us did. That night was strange, one of the strangest i can remember. For the last four months the sounds of wheezing and stridor filled the night air. At first it caused concern and a feeling of dread but, after so many nights laying near our boy hearing these sounds it was oddly comforting. It was comforting knowing that as long as stridor filled the room he was breathing, breathing like a freight train but still, breathing. That night was the first since he was born that not a single sound was made as he floated on a cloud in dreamland. Neither of us slept a wink that night, we both kept getting up to check on our boy, and thankfully that noisy breathing so many healthcare professionals said would go away finally did, and he was just breathing. Our family will continue working alongside CWL to bring awareness to LM and all other airway malacia. Thank you Stephanie and Coping With Laryngomalacia for all you have done for us and all those other families who have received care packages or who have followed for all of your inspirational messages and words of hope that help to make a gloomy day just a little brighter. Breathe Easy.
We struggled for the past almost year trying to figure out what was going on with our 2yr old daughter Elizabeth. She kept getting little colds then would end up in the hospital very sick. I knew in my momma heart there was something going on. Fast forward to January 2022 Elizabeth had her first bronoscopy and we finally found out what was going on. She was diagnosed with severe bronchomalacia and mild reactive airway disease. Her right upper lobe had already collapsed and her left was starting to do the same. After finding all of this out I started researching bronchomalacia, I stumbled upon CWLM support group. I am so glad I did, because I know there is other families out there that are dealing with the same issues we are. This support group has help me not feel completely lost, and many moms have great advice too!
My boys are now 2 and 4 and I return to coping with lm frequently to lend support however we can and to receive support in many different forms. Sometimes just for validating words of reassurance. It means the world to be able to have someone say, "yes! me too." I am so grateful for the gifts we have gotten, but mostly the community that was shared with us that understood. Thank you coping with lm for all you do!
When my son was diagnosed with LM, I was researching everything I could get my hands on to educate myself. I found CWLM on FB and joined immediately. I was so grateful for the resources they provided because a lot of the time I didn't even know what questions to ask. I felt like I had the right tools to be successful. It gave me a lot of comfort knowing others who had gone through what I was going through were there for me. Knowing you are not alone can make a world of difference.
I wish i had found this non profit sooner! I was struggling to figure out what to do with my son. This page has helped me connect with other moms that are going through similar things. it also provides resources, care packages and MD articles about topics we are all searching to find information on.
My daughter was diagnosed with LM back in January of 2021. We didn't really understand what that meant at the time. Around November 2021, my husbands cousin got me in touch with someone who has a child going through the same thing. We started talking and she introduced me to this group. CWLM has allowed my husband and I to get more advice on how to help our daughter and plenty of resources as well. I have felt heard and don't feel as alone as I did before. Their care packages are well thought out and my daughter absolutely loves her blanket and her Lu the Lamb. Thank you guys for everything you do. If you have a child with LM I definitely recommend them!
We found CWLM when our daughter was diagnosed with Laryngomalacia. The resources and support have made a big difference by empowering us and helping us be the best advocates for her needs. When medical professionals haven’t had the answers we have found the resources through CWLM and continued to pursue the best treatment for her. With her upcoming surgery we are very anxious but the care package sent to us has lifted our spirits and reminded us of the amazing community we have found through CWLM.
Where do I begin….When we started this journey 6 months ago, I felt so alone, scared, and so anxious about what the future would hold. I was told time and time again that this condition was mild, that she would grow out of it, but for us things just got worse and worse as she got older. Finding coping with LM has helped me connect with so many other parents also looking after a child with Malacia, it has provided to with invaluable resources, social media content (this has been really helpful in showing my family all about these conditions) and it is just overall really helpful knowing that there is an organisation specifically out there to support our little ones with airway disorders. I’d take away Elspeths pain and suffering in a heart beat, however all the suffering she has been through has provided us with an amazing support system and life long friends. I cannot thank you enough!
They did a GREAT job recommending a dr for my baby girl Salem. She had already had one airway surgery that was botched but my concerns were ignored and I had no idea what to do. They helped us find a dr that not only listened but also saved Salem's life.
Our Daughter Was Diagnosed With Laryngomalacia At 1 Month Old It Has Been A Struggle Ever Since Especially Since I’ve Never Heard Of It Before and Had No Idea What To Do .. We Have Surgery Oct.5 & I Couldn’t Be More Nervous.. I Would Like To Thank Everyone Who Made This Care Package Happen I Am So Thankful It Is Truly Amazing We Love LuLu The Lamb Already ❤️ The Blanket You Could Tell Was Made With Love
My son was diagnosed with LM as an infant. When he turned one things seemed to be ok and he did well for a few years until he was 4. After a lot of advocating (mama bearing) he had a scope and when he was 5 years old they said he needed surgery for the LM.
I found Coping with Laryngomalacia and felt so supported and not so alone. What a fantastic resource for myself and other parents dealing with littles that struggle to do something that so many take for granted = breathe.
So many sleepless nights and so many doctors appointments. So much fighting with the ‘professionals’ to get them to pay attention. Sadly I learnt from the group that I wasn’t the only struggling with the advocating and sleepless nights. I took comfort knowing I wasn’t alone.
When my son received the care package just before his first airway surgery my heart melted. I had tears. It meant so very much. My son felt special knowing that people from the United States (we live in Canada) were supporting him during this journey.
I honestly don’t have the words to express how thankful I am for Coping with Laryngomalacia.
My son was diagnosed with laryngomalacia at 6 weeks old after a long battle with the doctors. I was scared worried and confused when I was handed a bunch of leaflets “on his condition” I wanted to know why my son stopped breathing all the time and sounded like a squeak toy. This group opened up a whole new world to me of people going through the same thing! I could ask questions and get answers and also have support network also! I could not of survived these last 5 years without this group to get me through and my son finally had surgery last week and we even got sent an amazing care package which has really cheered him up in his recovery and let’s a mama like me know I’m still not alone
I am so grateful for Coping With Laryngomalacia. When my baby was diagnosed with laryngomalacia we were unprepared and terrified. My little one has a “mild” case, but still needed a sleep study and we were sent an amazing care package. My daughter’s absolute favorite items are the blanket and Lu the Lamb. Our little one has multiple disorders and Lu and her blanket have accompanied her to various appointments and procedures providing immense comfort. The community facilitated by this organization is also amazing. With any disorder, and especially with a rare one it is so important to be able to connect with others who have experienced and understand the journey. I am so grateful for this organization and look forward to the day that we can provide information and assistance from the other side.
Knowing something is wrong with your baby but being dismissed at every turn is a truly terrible feeling. This organization made me feel heard, and gave me the confidence I needed to speak up and fight for my baby. He’s almost one now and thriving. I can’t speak highly enough of them.
My baby girl was diagnosed with severe LM and obstructive sleep apnea at 2 weeks old. This is my second child but this is all new to me. She was operated - supraglottoplasty on May 15th 2021. This group has been a great help for us. We also received an amazing care package. This made us feel that we weren’t alone. Thank you !
My daughter was just diagnosed and had laryngomalacia repair at Massachusetts Eye and Ear. It's a newfound diagnosis for us, after two years of aspiration on liquids. Coping With Laryngomalacia helped ease this by sending an awesome care package. I was amazed at how much came, including an adorable stuffed Pax Pony, a crocheted blanket, and a ton of other goodies for both my daughter and myself. This organization is definitely a benefit to the Airway Disorder community, thank you!
Coping with Laryngomalacia has helped me in more ways than I can express! We received a care package for my daughter that was filled with the most thoughtful and perfect items. This organization has helped is cope tremendously!
I'm glad I found coping with laryngomalacia as i had no clue about my sons conditions and didnt know anyone in the same circumstances, but this group and the people in it are absolutely amazing the support and care packages are truly heart warming in such a scary time!
Couldn’t love them more!!! They have been my go to since my son was diagnosed at 3weeks old! And to top it all off they are sending my now 2yr old warrior a care package for his upcoming surgery! They definitely have a special place in my heart!
Coping with LM has had such a positive impact on our journey with our daughter LM diagnosis. From relating to others in the group to the support and suggestions, we are so thankful for this wonderful community and The founders behind this organization for helping families like ours!
This is such a incredible organization I wish I would have known about them when my daughter was an infant searching for answers about what was going on with my baby girl, when I was told it was just laryngomalacia not to worry she would grow out of it. I am so happy we found them and the answers that we so very much needed. The care package they sent us when my daughter had her sleep study was amazing she loves her Lu the lamb, hat and blanket. Thank you for all you do. You are so greatly appreciated.
I wish I would have known about this organization while my daughter was an infant. Since I have found them, they have helped me to advocate for my daughter, and understand what she is going through. Thank you so much for all that you do to help families like mine out. We appreciate all that you do.
I cried this morning when I received my daughters care package. This great organisation shipped us a care package all the way to United kingdom. The page is a great support for parents like myself. Bonnie will be brave and hold her lu lamb for her sleep study. We love COPINGWITHLM. From the bottom of our hearts we no we are not alone xx
This charity goes above and beyond. They make sure no kiddo fights alone.
Previous Stories
My sweet girl was born prematurely at 33 weeks. Right away she was put on 70 percent oxygen she was not breathing on her own. From that day on she would turn completely blue grey every time we tried to feed her. I was told for 4 months it was inpropper swallow suck coordination. After occupational therapy, feeding tube, oxygen, sleep studies they finally did a scope and at 9 months old was the first time I heard that term larygnomalcia. I began doing my own research and found this amazing group coping with larygnomalcia. This group has helped us and encourage us on our journey
When my lil guy was discharged from the nicu we knew something wasn’t right. He was turning blue 8-10 times a day. So grateful when I found Coping because they helped equip me with science, facts and information so I could better advocate for my sons needs. Their support was so critical for me to get him the care and treatment he needed
Such a great organization to find at one of the lowest points I've had as a mother. So thankful for Stephanie paving the way and spreading the knowledge she has obtained regarding laryngomalacia. The care package we received prior to surgery was so appreciated but the ongoing support is what truly makes this organization unique.
What a wonderful charity. There to support me when I just didn’t know where to turn anymore. The medical system fails these airway babies and their parents, but CWL is a light at the end of the tunnel. Thank you so much for the care pack. We were lucky that the bronchoscopy was the end of the nightmare for us, as found an haemangioma and treated it, but it had been a long battle of zero sleep and numerous trips to the hospital, and the fact we received this support was invaluable. We still use the blanket every day, and Lulu the lamb was the first Teddy he’s ever loved. Thank you
Coping with Laryngomalacia, have helped me through so many trials and tribulations with my little ones care.
I will be forever thankful for the support they have given me even though we are in another country!
They sourced our ENT for us, gave us advice and guidance with what to ask and what to expect, gave us strength and support on those long hospital nights where all you need is to be heard!
They cared when seemingly no one else did. This is a hard hard journey to walk down, I dont know how I'd have managed without them, I really don't. Thank you for all you do.
This group has been so amazing and supportive! My daughter has laryngomalacia and was recently diagnosed tracheomalacia.
My daughter was born in March 2019. Instantly we knew there was something wrong when she was placed on oxygen, she quickly recovered and they put it down to her delivery being an emergency c-section. She breathed very hoarse and loud and we were told it was mucus from the section and it would relieve itself in a few days. But she never improved, she only got worse, she has chest retractions, tracheal tugs and struggled to breast feed. After constantly returning to the doctors and hospital and being given mixed diagnoses from different doctors her gp finally suggested it could be laryngomalacia when she was 5 weeks old. After that I wanted to find out more information and thankfully I found Coping with Laryngomalacia because it allowed me to for the first time have a voice, where my voice since she was born had been dismissed and undermined. I had suddenly been introduced to a family of others who knew exactly what I was saying and who had given me the best advice on not only treating my daughter but supporting my to become to best advocate for my daughter. If this company had not been established I imagine it would have taken me a lot more time and I would have been consumed with stress, but this company was available to help me navigate a journey I never thought I would be on. The blog allowed me to access and process thoughts I'd been too worried to ask and also recognise the reality of carer burnout. Overall this company on my journey was a god sent. The positivity that radiates from the founder is unmatched and I'm so thankful that she and other members were there to support me at that very scary time in my life and that I can now be the same support to others starting out on this journey with the mentorship program on the Facebook group.
It’s hard having all of your kids have Laryngomalacia (I have 2 girls). It’s harder when one of them needs surgery for it at 4 months, then again at 2.5 years old. It’s even harder when your new 3 month old also needs surgery. Coping with Laryngomalacia makes it sooo much easier. I have never met a more interactive and supportive group of people. I applied for a care package through the website. I didn’t have high hopes cause there are a LOT of kiddos across the globe that need care packages and assistance, not to mention everything with the pandemic. I got an email back stating that it could take up to 2-3 weeks to hear if we had been approved. Then five days after I applied, I received a package in the mail. It brought me to tears full of gratitude. Our voices are heard with this organization. They are making a HUGE difference. Even at 3 months old my little LOVES her blanket, and her Lu the Lamb. And I can relax while we’re in the hospital for surgery thanks to the amazing care package that they put together for us. I have nothing but good words, love, and appreciation for Coping with Laryngomalacia. They do AMAZING work and AMAZING things!!!
This group is worth its weight in gold. So much value in this community and organisation that supports on multiple levels. My family have greatly from CWL and it’s members knowledge and know-how and it’s Chibebe program. Truly priceless. Thank you.
I live in the UK but coping with Laryngomalacia is the only significant community of support I could find online. It has been a huge help to me to not feel so alone as a mother to a child with LM/TM. The information shared is trustworthy and often from paeditrician. It's a lifeline I'm so grateful for
My daughter was intubated at 4 weeks old. We had no idea what was wrong until Tracheomalacia was mentioned. I’m so thankful I found this wonderful organization to help me better understand what’s going on with my little girl.
Coping with Laryngomalacia is a truly wonderful group and despite how large the group is (worldwide) their is no drama even when we don't all see eye to eye. The moms are always willing to give advise and support is so great. It is a group that doesnt matter the time of day their is always someone who will read and give u a uplifting msg. Aside from the emotional virtual support coping with Laryngomalacia also has manny resource programs to help the fimalies during hard times. 3 examples Care pakages that are filled with love prepared by the founder herself, The pj project for tube feed babies and the chibebe pod for babies up to 6 with reflux issues. Each have their on way of qualifications and each are wonderful. Coping helped me 2yrs ago when i felt so lonely in that nicu room mid december, my filled with monitors and wires when i was introduce to this group it was as if light was again made for me. They support me emotionally i met moms who are just a drive a way we now meet up during non flu time and it is all so great to meet people going through some of ur own daily situations. Thanks to coping with Laryngomalacia for helping me find me when i was lost in the new malacia world. I am so appreciative to coping with Laryngomalacia I now volunteer and advacate in this malacia word i live in. I am a malacia mama!
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I am so thankful for the support i have received from coping. I have a family that i know is their to listen to me when i need guidance in the rocky lm road. They validated my concerns even when a doc has 2nd guessed me.
That is why today i am a proud VOLUNTEER for coping and i will share my testimony with who ever ask
Thank u coping for all the support
Thank you so much Coping with Laryngomalacia for your beautiful care package! Our little sweet pea Eli (and his twin brother Finn) were born premature at 31 weeks on October 20th, 2019. Eli has been in the Nicu for almost 100 days and has had trouble feeding primarily with severe reflux and BPD. His doctor knew something wasn't right after brother Finn went home and Eli was still needing a little bit of oxygen, along with some strider. His neonatologist spoke with the pediatric ENT and they decided on a scope and supraglottoplasty last week. We are hopeful that this surgery will help Eli and his bottle feedings. XO
This organization is amazing! I found them on Facebook after a vicious internet search over my son's symptoms. Since then the group gave me the tools to fight the doctors for an official diagnosis. Because of the courage and support of these fantastic individuals my son was officially diagnosed with laryngomalacia and surgery has been scheduled. Finally a bit of relief. But it gets better. I was informed that they offered a care package for kids about to go through surgery. I submitted my request and unfortunately there were several problems with my address for the package to be shipped (this happens often) but they didnt give up on me or my son. They went out of their way to make sure he recieved his package and I couldn't be more grateful. This program truly is run by the most dedicated and caring people. I started on this journey feeling alone and frustrated but thanks to this organization my son will get the help he needs and hopefully his quality of life (and my stress level) will greatly improve. Thank you so much!
This is such an amazing nonprofit organization! My daughter was diagnosed switch laryngomalacia as a newborn and is now waiting on surgery, and Coping with LM has been so resourceful and made the entire journey easier. We are so thankful for our care package as well; she especially loves Lu!
At 5 weeks my son was diagnosed with LM, and I was not gave much information, but they said no further tests would be done untill he was showing signs of failure to thrive or develop etc.
Then I became aware that any consultant/ health visitor whom seen my son required me to explain what he had.
This then raised concerns that Scotland, lanarkshire were very under educated in this airway disorder. Being a mother first (although adult nurse) I made it my job to research and work on my goals and ensure my son recieved the best care. This page has been my life saver, my support, my advice and comfort on my bad days. Amazing to be part of this.
Thank you.
P.s supra T&A removed at 2 years 7 months.
Stephanie, the President and Founder of CWL is so committed to helping and educating families. I found this group as I was sitting in the waiting room of the OR anxiously hearing the word Laryngomalacia for the first time. My 3mo old baby girl had just had a triple scope and I sat there trying to pass the time until she was finished with her procedures. That was just shy of 3 years ago. In those 3 years, I have seen Stephanie's advocacy and unwavering support for newly diagnosed families and families who have been on this path for a while. It is an honor to be a part of this great charity.
This page was a lifesaving, invaluable resource for me! It is so helpful to parents of newly diagnosed babes with all stages of LM!
My daughter has Laryngomalacia, tracheomalacia, and pharyngomalacia. I’d be completely lost without this page!! So much love, support and prayers from all over the world!
My son is going through so much with laryngomalacia but this sweet family has helped him to smile and laugh through it with sweet little Lu the Laryngomalacia Lamb
This organization has been a God send to my niece as she has had to learn to help my great nephew cope with this condition. She has since had another baby who may also have a mild case so I am thankful this group is there to educate and support her and her husband and two boys. Thank you!
I found this organization after going through a scary hospital stay for my baby with laryngomalacia. It has been so helpful following others journeys with this condition and not feeling so alone. My baby recently had another surgery and he was provided a care package to help us through the hospitalization.
Wonderful nonprofit organization, i didn't even knew about laryngomalacia existed when my lo was diagnosed and this organization help us in so many ways that I have no words to thank them enough.
So special. Even in the Netherlands!!!
Out daughter had had a Supra en Lu the Lamb went with het for support
I would have been lost without this organization. They helped us by being very supportive and understanding of our situation and son's condition. Our son has Laryngomalacia. He ended up having airway surgery right before his 2nd birthday(previously doctors did the wait and watch approach). They are supportive through every step of dealing with this condition. We were dealing with reflux, poor weight gain(he would use up his calories because breathing was extra work), and sleep apnea. They were there for us and helped however they could. They understood what we were going through and how hard it can be. We applied and were approved for a care package when he had his surgery. That care package helped him cope with having surgery and it was also helpful for me while I stayed in the hospital with him. We are so thankful for this organization and greatly appreciate all that they do to help out others like us. I would give them an infinite amount of stars if I could.
-Holly Trea
I was so lucky to find this group. I had now idea what lm was and my son's Dr didn't tell us anything about it. This group has been with me through everything. I share this group every chance I get.
I was so lucky to find this group when my grandson was diagnosed with LM. It is such an informative group! Luckily I have not needed a care package, but I am so thankful it's in place for parents and children when it's needed.... Although everyone could use a lulu lamb, it's so cute❤️
Thank you so much for providing a place of support and sending us the care package. My son is already snuggling Lu and his blanket and I'm sure it will bring great comfort during his sleep study. I also loved the other little goodies for me...I put them in my "go bag" that I have ready for unplanned admissions.
We are so thankful for the care package we received in July. Our little man had his Supra and is improving daily.
Coping With Laryngomalacia helped my family so so much. I was under so much stress because my perfectly healthy daughter (or so i thought) made a turn and everything went down hill. From feeding tubes to wearing oxygen at night. I felt alone. I felt I had no one to talk to or share how I was feeling. This group and the wonderful care package that they sent us gave me just the support I needed. Who helped me realize we werent alone on this journey. I am so beyond grateful for them.
This group has been such an amazing help for my best friend and her family and it’s such a loving community!
A really good friend of mine has two amazing LM warrior boys. I know she has found such great friends and others to reach out to about LM through this group! So awesome to be able to have a community and group to power together for a great cause.
This group makes the world of LM not seem so big and scary. It makes you feel like you and your child fit in, somewhere in this world. I have learned so much more through this group, than from doctors and Google combined. No words can describe how greatful I am for this group; and Stephanie for creating it.
They provided my family with an amazing and thoughtful care package before my daughters surgery that really helped me feel like we had support while we were going through that difficult time. Truly an amazing organization!
When James was first diagnosed with Laryngomalcia, i felt alone and scared for his future. But thanks to Coping with Laryngomalcia James's journey surviving through LM has been amazing. I have felt so much care and support due to Coping with Laryngomalcia i cant even begin to explain!
Knowing there were others out there I could reach out to while in the hospital with my son and ordering lulu the lamb to be by his side I’m forever grateful!
I was sitting alone with my 4 week old, an hour away from family and friends, in a hospital room after learning he had laryngomalacia and crying off and on for a day. We had been put through the ringer already and I was scared. I had no idea what to expect. What I thought was just loud newborn breathing turned out to be so much more and I was lost and overwhelmed. Then, I found this group.
While Google wasn't coming up with much information, it thankfully sent me to them, and boy do they have me covered. From eBooks, to doctor cheat sheets, to care packages, to new friends, I feel supported and surrounded instead of lost and alone. I'm so grateful.
My little squeaker was born on 5/16/16 and by 6/30/16 he was going under for a major surgery I couldn’t even pronounce. Coping with lm was a light in the dark for us. By the end of our first appointment, google had led me to the biggest help besides our doctors amazing hands! I really loved the care package that was rushed to my doorstep and the community full of support and answers no matter what time of the day or night I needed it!
This group is so supporting to our family. Cannot imagine going tough this tough time without those amazing people in this group.
My friend received so much needed information and support when her son was diagnosed with LM. I am so grateful she has such an amazing community to help her through each step!
Coping with Laryngomalacia is a awesome nonprofit, when my daughter was diagnosed at two months old with Laryngomalacia I had no clue what it was I was scared to death and then I found this group and everyone was so informative and caring ❤️
This non profit group is amazing. They helped me know what questions I needed to ask the specialist. They sent a care package for my little one and sleeps with his lamb every night.
This group has helped my friend Tarah through so much with her two littles and I’m so happy it exists for all the parents going through this obstacle.
Coping with Laryngomalacia has helped save my sanity and my child’s health as we go through the process of helping my little guy out. From a listening ear to resources available they have helped us tremendously. Thank you.
Coping with LM helped me through a terrifying time in my baby's life. It is no exaggeration that the minds of the people this organization connected me with saved my daughter's life. Without the education of this organization, I would have had great difficulty advocating for what my daughter needed. She was oxygen deprived due to this condition and I knew exactly the questions to ask and tests to request to help my daughter. I surely would not have known without CWL.
My daughter was born with laryngomalacia, but we didnt get a diagnosis until she was a few months old. My husband and I did a ton of research, but felt so lost and overwhelmed. Until we found Coping with Laryngomalacia. this group gave us a community, a wonderful network of parents who have been there before and those who were on the same path. CWL gave me purpose. I help to fundraise to give back to other malacia families, those who need the love and support, those who will be there for the next wave of malacia moms and dads. Coping offers families with upcoming procedures care packages, to remind them they are never alone on this journey. I would be so lost without CWL
When my son was diagnosed with severe Laryngomalacia, I was scared, overwhelmed, and didn’t know where to turn. I found CWL and knew I found my tribe! The information provided on the website was most helpful, but even more helpful was the community of parents all going through the same thing. Reading through everyone’s stories helped me know what questions to ask and how to best help my child. When we received a Care Package for my son’s airway surgery, I felt the love with each item that was included. I am forever grateful for the support from CWL! I am proud to be a community member, donor, and volunteer!!
Coping with Laryngomalacia not only sent my son a beautifully thoughtful gift for his first surgery but they have also created a community for parents to learn, support and grow in their child's diagnosis. This non-profit has been invaluable to us as parents and we have been fortunate to make some wonderful friends with other parents across the globe.
Coping with LM was the first support group I found in my daughters many medical struggles. We recieved an amazingly touching care package, but also invaluable information. Resources, research articles, peer to peer support, and so much more! I would have been lost with Coping with LM!!!
There are truly no words that express my love for Coping with Lm. My sons life was saved because of this amazing non profit. I now have the joy of giving back with them
This group has helped our family so much! We thought we were alone in this battle we are fighting for our son but theb we stymbled upon this group who has helped with so much information and given us strength and support to fight for our baby!!
I can't even begin to express what this charity has meant to me as a LM mom. They have provided information and support and have been there when no one else understood what I was going through. We received a care package for one of my little guys hospital stays, and we loved it, but we have benefited just by being included and this little community. Coping with LM is awesome!
My Maggie had surgery at 3 months old she had a tough time breathing and eating and maintaining a good weight after a lot of opinons and brush offs telling me she would grow out of it !! she was finally referred and had the operation performed at Evaline children hospital and went from strength to strength straight away! I was amazed to see her act and look like a healthy baby so quick but still noone has seemed to hear about her condition untill I found this page and seeing all these children and families going through what we did is a massive comfort to know your not alone .
My son was diagnosed with LM when he was 8 weeks old. He is now 11 months. Finding this organization, Coping with Laryngomalacia, has been a blessing. Before getting my son's diagnosis, we had never heard of LM before. We felt all alone because we didn't even know anyone who had a child with an airway disorder. Finding this organization and their support group has helped us in so many ways. It showed us we are not alone in this journey. We just recently received our care package for my son who is having surgery next week. I wish I could give more stars than just 5....they deserve an unlimited amount of stars!! Stephanie and all the other volunteers make this organization amazing!!!
~Ashley~
South Carolina
This group is amazing. It offers support to parents who had kids with LM and other airway/ENT issues. It’s a very scary feeling to feel alone with a child who has serious health issues and this group offers the support to ease that. Hearing other parents stories or hearing about how they handled a certain situation is beyond helpful. Thanks CWL!!!
Words aren’t enough to express how grateful I am to this organisation. Bug still thank you. I owe my daughter’s life to stephanie and to fellow LM mommy warriors who helped me get through the most difficult days of my life. I remembered, i was in panic, deeply stressed and in the verge of breaking out when I found this group. I posted a video and in a few hour, fellow lm mommy’s have shared valuable advises and experience i wont ever forget. And on the road to finally being heard, CWL is alongside me and my daughter. Alexa is now thriving! I owe a lot to CWL - thank from the bottom of my heart.
My son was diagnosed with LM and I knew nothing about it and Coping with Laryngomalacia has been such a helpful resource for gaining knowledge about my son's condition.
My daughter was diagnosed with Laryangomala at 4 days old. I had no idea what LM was or what her having it even meant. I googled it and found this wonderful source of information and support. Anytime I have a question or worry about my daughter's LM I know I can turn to this group and find what I am looking for.
This nonprofit has been amazing. My 18 month old was diagnosed with Laryngomalacia and the support we received was astounding.
This past year my little one was diagnosed with laryngomalacia. It was my job to research all I could. In my search I found much more. A village of parents who were walking the same path. Similar story’s, a place for advice, advocates, all held together by a great Non Profit. It is because of Parents Coping with LM that I am able to share, teach, and have a strong network of support.
We have spent countless hours at Motts Children’s Hospital U of M and the care package and resources we received helped us out so much.
We are proud of this amazing organization and are now part of something so much bigger. We now have a LM family!
My son was diagnosed with Laryngomalacia at 17 months old and had surgery a few weeks after being diagnosed. I was completely uneducated about Laryngomalacia but thanks to coping with Laryngomalacia, inc I was able to read and learn about everything. My son had surgery and when Coping with Laryngomalacia found out he was having surgery they sent him a breathe care package for him and also a encouraging letter for caregiver which helped my anxiety once I read it. This nonprofit is not only about helping the children but also spreading education about Laryngomalacia.
Coping with laryngomalacia has been amazing for my daughter and I! I didn’t know where to turn or who could help my daughter because I was told she was normal or she would outgrow it! Without CWL I don’t think my daughter would be here, they gave me the information I needed to be able to stand up for my daughter. She stopped breathing 112/hour and I was told it was normal newborn breathing! Thank you for everything you do CWL!!
Thank you so much for the care package. It was touching to see my 16 month old home on to her new lamby. The blanket, gown, hat, and cap were extra special to us.
Our daughter showed signs of laryngomalacia at just a few hours old. We had no idea what it was, what was happening, or what to expect. This group not only had answers for us but support. And they sent a care package for her first surgery. The amount of support offered to lm families is priceless! Our little girl is now 3.5 and still suffering from mild lm.
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Your organization helped our little family so much in the beginning of our journey. From the care package before surgery, up to the countless comments and support, all have helped immensely. Our daughter is now 2 and doing better. But we needed help, guidance, and support during such a hard and scary time. Coping with lm was there! Thank you!
My son was diagnosed 6/14/17 he was born 5/2/17 with our first hospital admission 5/15/17 no one knew what was wrong with my sweet boy. We saw dr Thottam 6/30/17 and emergency supra was ordered I filled out preop paperwork and for a care package for my sweet baby. he got his package 7/3/17 and his supra was 7/6/17. as I am sure some of you saw on the fb page for sweet baby A. well baby A just had a repeat sleep study done we may be going in for a second surgery soon. he still has tons of issues but thanks to all of you amazing donors luthelamb helped our stay and his amazing gown from Gracies Gowns he stayed as comfortable as possible. Thanks So Much baby A's Mom
After battling the 6 first months of her life and two instances where she turned blue we now now she has TM LM and aspirates. She also has an arachnoid brain cyst that was discovered during a sedated MRI. This non profit has provided us with daily support and without these lady’s I probably would have had a mental breakdown. They are all so well educated.
This is an amazing non profit organization, my baby got diagnosed with LM and their website and support group are phenomenal.
This organization has helped me in so many ways!! My daughter was diagnosed with LM at 5 weeks old, and it has been a long 3 months since! She is scheduled to have surgery in the next week and they sent me a very thoughtful care package, to help us cope with everything.
I would have been so lost without this group and all the information I have learned. Because of them I have been able to fight for my daughter and get her the care she needs.
Very supportive. Offers us LM families endless resources, a place to connect and a community where we don't have to feel different.
Coping with Laryngomalacia has been more than a "group" it is a family. When,my,son was diagnosed with Laryngomalacia, I was scared, i didnt know what this thing was let alone pronounce it! Later that night I took to the internet, the first site that popped up was Coping With Laryngomalacia. I was relieved because I was no longer alone, there was someone out there who understood my fears.
Fast forward 3.5 years, my son is doing great. He had the life changing surgery @ 18 mons. and received his care package which was filled with a beautiful crochet blanket, which is his favorite.
Although my son no longer has many issues, I am still very active on the FB page. I am blessed to have to opportunity to be a World Leader, where I hope to continue to support families on their LM journeys.
There will forever be a special place in my heart for Coping with Laryngomalacia
So supportive and extremely helpful. Our son was diagnosed with tracheomalacia at 1 week old, then laryngomalacia at 1 month, along with gastric reflux, cyanosis, sleep apnea, dysphagia, aspiration and asthma. Try to Google that for help! (sarcasm intended). Then our son had a supraglottoplasty and epiglottopexy at 2 1/2 months old. This non profit organization sent us a rushed care package to help our baby during his hospital recovery icu stay. The love, support and education have been amazing!!! Our son is now scheduled for revision surgery and I feel so much stronger this time around because of this organization and group of people! So blessed ❤
My son had breathing problems and these people sent us gifts and information. I found it to be helpful. Joey Barreras
I've witnessed Coping with LM do some amazing things for parents and children that are dealing with Laryngomalacia, they are a very kind organization & very giving! These hard working parents, grandparents, aunts & uncles that go out of there way to help these families deserve way more than just a high rating! They are an amazing group of people!
It is so scary to hear your baby breathing across the room. I thought I was just an over protected mom. Turns out I wasn't and my baby has LM and TM. I would never of made it through the first 2 years without the support of this foundation and listen to other mither's stories. Now my baby is 4 and very healthy after his surgery. I try to give encouragement to other parents whenever I can on th Facebook page !
This charity has helped a great many of people I know in need of comfort, knowledge and guidance through their son's surgeries and many diagnoses. I love to donate to such an incredible organization!
When my son was diagnosed with laryngomalacia when he was 6 weeks old, it was incredibly overwhelming...and there was very little information out there. I am so thankful for this group as we navigated through the scary unknowns. We received a care package in preparations for my son's surgery, and it was so heartwarming to know we were thought of, and cared for, by a community that understands our journey.
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Coping with LM has been an outstanding resource for my friend Tarah and her son, who was diagnosed shortly after birth. They've been incredibly supportive, even going so far as to ship a care package to her overnight for her son's surgery. They provide amazing education and support for not only the parents of children with LM, but the family and friends who are also confused and curious about this condition. They're wonderful, and five stars isn't enough!
You were there for my friend Tarah when she needed support most. This group really cares about the kids and their parents♡
I have never felt such a relief as I did when I found coping with LM. I was a 2nd time mom and my infant was struggling to breathe. Not a doctor in sight would listen to me. I found thi group and figured out how to explain things and exactly what we needed to do. I am grateful beyon words for coping with LM.
Thanks to Coping with LM, I never journeyed alone. Whenever my daughter was newly diagnosed, I found this organization who guided us through a very tough time. They gave me questions I didnt know I needed to ask, advice when I didnt know where to turn, kind words when we hit rough patches, & gifts when the scary word "surgery" was brung up. Without them, my daughter would NOT be getting the proper care she so desperately needed.
Avery with her lu the lamb! So happy I found CWL When my daughter was in the children's hospital for laryngomalacia.
This group was a lifesaver for my family! Other parents helped me problem solve and advocate for my son while offering so much emotional support! Thank you so much Stephanie for all of your hard work!!
Hi I am Girlie Deneros from Philippines, upon checking in the internet about Laryngomalacia, I encountered your website, and I would like to ask if you could also help my 1 year old son, who was born with multiple congenital anomalies and diagnosed with Laryngomalacia. Baby Ramilan also has both micropthamia( small eyes) which means from the time he was born he is totally blind. from 4 months until now, his feeding is thru NGT (tube feeding). the doctor already advised us to shift to PEG feeding, but due to his recurring Pneumonia his operation is always postponed. I hope thru this website my son could be able to feed thru his mouth, if it is possible to undergo operation to treat his laryngomalacia. I noticed also, that during his sleeping, he sweat a lot, suspect that he might also has sleep apnea, but I was not able to discuss that to his pedia. I hope you could help me and my son. Thank you so much and more power!
Coping with LM has given me the knowledge to know what my son needs in his care. They've provided me with a community of support to help through even the hardest of days. If ever I have even the smallest of questions they are there for me. They give hope when we're scared and lost. Without coping with lm I would be at a loss on what to do for my son. Stephanie is personally there for each and every parent.
We have two children with LM. We had zero resources when our son was diagnosed and he had numerous problems that we didn't exactly know who to talk to about. When our youngest was diagnosed with LM and TM I knew there had to be more information out there and found Coping with LM. The about of information and resources that we have received through CLM has been priceless. From what to expect during surgery to the right questions to ask and even listed of specialists that are well informed. LM can have so many compounding factors and I know we would still be running blind if it wasn't for this amazing organization. The online community is also an endless source of comfort knowing that you are not the only family going through these struggles. We cannot say enough great things about CLM!
Coping with LM and the community that surrounds this great organization has helped me so much in the 6months of my daughters life so far and especially since she was diagnosed with LM at 2months old. Stephanie is always super helpful and supportive and easy to get in contact with. They quickly helped a friend of mine who was going through a rough time with her son and sent him a wonderful care package a.s.a.p. I'm so happy to have heard of and got to know of coping with LM. I will support them in any way I possibly can and forever spread the word of this great organization.
I found this organization and It's Facebook page on a Google search after my 2 month old was diagnosed with Laryngomalacia. I have learned so much from Stephanie and the other wonderful people here. With the information I've learned here and encouragement from others I have become a very educated advocate and voice for my son I didn't realize how much he was truly affected by LM until I heard stories from others that I could relate to. We received a care package in preparation for my sons upcoming surgery and I look forward to contributing to this program in the future as well. This is an organization doing great things for a very life changing but not well known condition.
I need more resources can someone please assist. Does anyone have any good resources or point in the direction of an individual or website or even agency that can explain more on children with laryngomalacia and reactions from colds??? My baby boy B was diagnosed with moderate Laryngomalacia around 6 weeks. I was extremely worried. However now that he is almost 2 years old he is doing much better. The only thing is: if he catches a common cold, the retractions, and sucking in between the breast bone becomes intensily present. I believe he will be asthmatic like my other children and myself. When my son gets a vold he wheeze and retracts rapidly and I give him a treatment and it clears things up and he is content. Even though this is only his 2nd ER visit. I would like something better to manage his breathing for these incidents. Im glad to have found this group. Hopefully I will gain a wealth of information.
This is a great organization. We have been provided lots of helpful information. We received a care package for our daughter Esmae before her surgery. We loved everything in the care package. Thank you so much for making such a wonderful organization.
My sweet little man was diagnosed with Laryngomalacia at 3 weeks old. After getting a second opinion and a Dr we trusted we decided to go the surgery route at 6 weeks old to make life a little easier on everyone- especially him. Without the guidance from Stephanie and a few other moms whose babies have LM as well I wouldn't have known where to start. This group helped me do my research, find ways to make my son more comfortable, and overall just made me feel like I wasn't helpless and lost. Before his surgery we received a letter and a care package with all these awesome goodies inside. ( Jace loves his Lu the lamb and his base ball lovie to this day!) I also got great advice and an idea of what to expect going in to the ICU after everything was done. After surgery I got an overwhelming amount of love, prayers, support, and advice. I would have no idea where we'd be without this group and I'm forever hratsful and dedicated to raising awareness for our little pintsize power houses. ❤️
When our son was diagnosed with laryngomalacia this past March, Coping with Laryngomalacia, Inc. was an amazing support! We have felt such a sense of community and learned so much, all because of CWL. As we continue our LM journey, I know CWL will be right at our side, helping us, educating us, and supporting us.
Stephanie Hueston and all of the wonderful people that make up this organization have given my family hope in a time of apprehension and worry. The personal support along with extensive references and resources have helped me learn how to be a better parent to my LM warrior. I am so grateful for this organization and everything that it stands for. Thank you CWL!!
My sweet boy was diagnosed with laryngomalacia at 2 weeks old. This group has been extremely helpful, in ways I can't even describe!
CWL has not only empowered me with knowledge as a mother and advocate for my child, it's also given me an invaluable community of support. It's a very unique organization, and I'm eternally grateful for the hard work that Stephanie does.
Coping with LM has allowed us to feel normal again. It is great to know that we are not alone at any time of day or night, and we are supported on the Journey we never thought we would be taking. Our daughter Keiley has received both a Chibebe Snuggle Pod and a care package through Coping with LM's great support programs. Keiley lived in her Snuggle pod which assisted her breathing until she started crawling, now she uses it as a bean bag to "Chill". The care package was a great comfort while Keiley was in hospital on a respirator after surgery. Knowing that she had her own blanket and gown, rather than relying on the hospital ones which can be so scratchy from years of use! I can not compliment the work of Stephanie and her family enough for what she does for our Babies, this is in no way enough!
When my daughter was diagnosed with moderate LM I was so scared. Coping With LM helped me realize I am not alone and educated me on what bumps in the road we may encounter and how to be prepared. I don't know what I would do with out this organization!!
Coping With Laryngomalacia gave me more support and education about my son's condition than I could have ever asked! The community of parents I have met that are going through the same thing has been amazing. Thanks to CWL, I knew exactly what questions to ask my son's ent and I felt comfortable because I was already familiar with his condition. Thank you so much, CWL!
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My l.o. is 8 months old and was diagnosed with laryngomalacia at 4 months after being misdiagnosed a couple of times. This group has been a fabulous resource to me and I only wish I found it sooner. They are truly helpful and do amazing things.
I am so grateful for this organization! After getting our sons diagnosis at 12 weeks I didn't know where to begin. This organization has educated me and my family and has provided us with a special care package for our sons upcoming sleep study. We are so thankful for y'all!
Coping with laryngomalacia, inc has been very helpful in the past few weeks as we just found out our child has laryngomalacia. The resources have been very helpful to help us learn and understand her defect.
This group was our main resource when our little guy was diagnosed with LM. We were told by all the Drs that we had seen we just had to wait things out and there was nothing we could do. Reading other parents of LM babies' stories helped us find what worked best for us while avoiding a lot of trial and error. So glad this exists!
This organization has helped our family so much. The information we received helped us advocate for the best for our LM baby, and the support kept us strong through it all.
Such a wonderful group. We live in a small community where Laryngomalacia is never heard of. They have given us so much information to help us get the care we need. Thank you so much for you wonderful help!
Coping with laryngomalacia has been there for us from day one. When i first researched the diagnosis while waiting on a scope in my ents office... the site popped up. I read the letter steph wrote to the new parent and just cried... my perfect little squeaky baby needed surgery... the sqeaks weren't cute, they were life threatening. No one understood, and i felt like my husband and i were all alone. Coping with lm has taught me so much. Whenever I'm worried about my son's health i go to the site, or the Facebook page to find answers. I am not sure how i would have gotten this far without coping with laryngomalacia!
We have found so much support this past year through this organization. Getting a diagnosis was one thing but finding out your son was of the few that would need surgery and have a year from he'll was another. Thank you for all of the support.
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We were diagnosed with laryngomalacia and had surgery scheduled one week later. We found this site. Not only did we find great resources, information, and support; we found d hope. They sent us a care package with a lovely blanket and Lou the lamb. We even got our package prior to our surgery! I can't express my gratitude for this nonprofit organization. We have been beyond blessed.
I am so thankful for this non profit. As a mom of a LM and TM baby I look to their support on a regular basis. They are a great resource!
I found CopingwithLM.org after 8 months of searching for help for my son. He was diagnosed at 6 days old with laryngomalcia but we were told he would outgrow it. After months of struggles with eating and him being unable to sleep I found this group. I soon learned that sleep apnea and reflux often go along with LM. My son had both finally at 13 months old he had surgery to correct his sleep apnea. During surgery they found he had severe LM and preformed a supra. The parents in this group are so helpful, kind, and supportive! Stephanie the founder of Coping with LM has done so much to support all of us and we received a wonderful care package before his surgery. I'm so incredibly thankful for all those organization does!
Very supportive to new parents. My daughter was diagnosed at birth after her father and I insisted that something was wrong. We both were familiar with newborn cries and here just wasn't right. We also noticed she breathed weird. She has a tracheal tug and GERD as well (which we noticed in the hospital right after birth). She was finally put on reflux meds this week. She's been on breathing treatments since she was 4 months old. I've found so much support and comfort in this group!
This is an amazingly supportive organization. When my daughter was born we were thrown into a spiral of health concerns, uncertainty and worry. I stumbled on CopingWithLM and was able to reach out to other parents for support and information. My daughter received a care package weeks before her surgery and still sleeps with the blanket 3 years later. Thank you CopingWithLM!
This group is amazing! My daughter is about to have her first surgery, and without these amazing people I would not know where to turn!! I cannot wait to get her a care package to make her surgery go smoothly and keep her comfortable.
Coping With Laryngomalacia is a great nonprofit organization that provides tremendous support and resources for families coping with LM, TM and BM!
Our little man has come so very far!! Being part of such an amazing group who understands exactly what you are going through is so helpful and reassuring. Reading other people's stories and seeing what they have/are going through, really makes you red not alone. I know there are days I just feel like I'm by myself, and no one gets it. Then, I remember this group and know I'm not alone at all!
My 2 year old daughter has LM, TM and BM. It has been a rough journey but this organization has been a great source of information and support.
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6 months ago I have never heard of Laryngomalacia and was in a world of unknown. This organization has provided tremendous support every step of this journey, whether it be information, questions to ask our doctors, emotional support, and a care package. This organization helped me to help my son. I will forever be grateful.
This is a wonderful organization of people who truly care and try to help. Laryngomalacia is a common problem yet most people have not heard of it until their child gets diagnosed. It can range from very mild (no big deal) to very severe (very big deal). There are all levels of severity discussed in the Coping with Laryngomalacia Private Facebook Group which is wonderfully managed by Stephanie. The group and the organization are very supportive and help parents, grandparents, and anyone affected by this diagnoses to cope and learn strategies as well as spread the word to the world about Laryngomalacia and other associated diagnoses.
This is an amazing group that has given us so much more information than we have ever received from any medical professional. Our ENT is wonderful but we found him after reading the stories of other LM families and deciding that we needed to speak up at the pediatrician's office. We are grateful for the support shown to us through their wonderful facebook page as well as a very kind care package we received before a surgery. This is a nonprofit that truely supports it's cause.
So thankful for this organization and all of their information. If it wasn't for this site I never would have pushed for more answers from her doctors! I'm also glad they have connected me with other parents going through the same struggles. It's good to know we are not alone.
I'm from Malaysia, currently my 6m first twin admitted in General Hospital. He had been diagnose with Laryngomalacia..we admitted since 2/5/2016 until now... currently using bypap via tracheostomy... i woukd like to join this support group hoping to gain more knowledge regardong my son condition.
When we got the diagnosis of laryngomalacia we didn't even know how to pronounce it let alone what it was. I asked the Dr. For more information but was given a small handout. So I searched on Google and coping with laryngomalacia came up. I clicked and began reading and found relief that I have help. So many awesome resources and families going through this along with us. We were not alone. It was such am amazing feeling to know that we were not alone and had resources to seek. This journey was very scary at first but now we have a wonderful community to help us.
I'm from the UK my son was diagnosed at 5 weeks old he's now 16 months and his condition is ongoing. He is still on repeat perscription for gaviscon and seems like he developing a sleep disorder which at first I thought may be down to having a new sibling. He wakes continuously through the night his breathing still loud that's if it doesn't stop for a bit and seems like an irritable kid during the day. I still don't fully understand the condition it still scares me and I still don't find it so "common". Well done to this charity will spread the word through social media.
I have 2 little ones with Laryngomalacia, one of which also has CHD and the journey has been so rough at times. Most new moms watch their babies breathe just because they are nervous that something may happen; however we watch our babies breathe because we know that the simple task of taking each breath is a struggle for them. CWL has been an amazing support through both of my children's medical journey and I am not sure where I would be without this amazing group.
Invaluable support at a time when we were thrown into the unknowns of a airway defect. Having never even heard of LM, TM, BM, GERD, supra, aortapexy someone was always there to offer support and advice and 16 months in I feel now I may even be able to offer some support to new members starting the journey.
This organisation allows me to do that and they ask nothing in return. Sally
When my son was diagnoses around 10 days old I was terrified. The first doctor we saw didn't offer much information, my family has no idea what it was and just commented on his scary my baby sounded. I found this group and finally found the information I needed to help him, found him a specialist, found the support I needed to care for my man! This is a great organization!
My son was dianosed at around 6 weeks old with LM. He had his very first surgery at almost 3 months old. Coping with LM has been a real life saver. They are always teaching out to help people that are dealing with LM. Not only is the founder a great woman but the members are awesome as well.
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When my daughter was diagnosed with laryngomalacia at 7 weeks old, I felt alone and terrified. this past year has been challenging to say the least--from feeding and weight issues, reflux, numerous dr and specialist appointments and now finding out a week ago she will need to have surgery that we were originally told she would not need to have--however, the support and the community from Coping with LM has been incredibly helpful. We are so worried about her surgery and can't even imagine how her 14 month old mind is going to cope and understand this but our worries have been helped by the special and thoughtful care package that this organization sent her so she can have some comfort during her hospital stay. Coping with LM is a wonderful support network for us and I don't know how we would've managed this past year without their knowledge, resources, and support
I was so thankful to find Coping with LM after my daughter's diagnosis. I learned so much about her condition and knew what to ask her doctors. I am thankful to know we are not alone in dealing with this.
My son was diagnosed at 6 weeks old with Laryngomalacia. After a poor sleep study, he was determined to need a laryngoscopy, broncoscopy, and supraglottaplasty. Within 6 days of getting our sleep study results, we were having surgery. I applied for a care package for my son and it arrived in 4 days, so he was able to take his blanket into surgery with him, and his ENT lived his special socks. My son enjoyed his stuffed lamb and it comforted him throughout the scary ordeal. We are forever grateful to this group for its kindness and support
My son was diagnosed with LM at birth. We first were told that it was a moderate case; however, by week three he started having trouble breathing and eating. We went back to the doctor and were told again not to worry he will grow out of LM and to just "work harder" to feed him. This just didn't feel right - my son was in distress while breathing and would barely eat a couple ounces at a feeding.
I started doing my research and came across this non-profit website and it was a LIFE SAVER for my son. I learned more about LM and also found another ENT Doctor through the website. We eventually made an appointment with this new ENT and he ultimately did surgery on our son. He is now thriving and breathing and eating normally. It is a miracle. Because of this site I was able to get information and act accordingly. It changed our lives and my sons life forever. Forever grateful.
I'm a nurse, so I should "get it," right? Well, a medical background gets all but forgotten when it's *your* baby, let me tell you. Finding this group at the beginning of our journey has been a Godsend.
I had no idea what was wrong with my baby girl and at a month old she stopped breathing, went blue, limp and foaming out of her mouth. I will never forget that moment. We learned she had Laryngomalacia I was terrified and looked every place I could for support I found Coping for Laryngomalacia after the fact and after her surgery but it's been amazing to talk to moms who have been there or be support for someone new going through what we did. This group has been a life saver and I'm so glad I found it. I'm so glad there's a place you can go to vent or tell something exciting or terrifying but you can because these moms know.
My daughter was diagnosed at birth. We felt so alone and confused until we found Coping with Laryngomalacia Inc. They have helped us so get through some of our most difficult times. I have connected with so many other mommies dealing with LM. The support we've received has been overwhelming!
I felt so alone once my son was diagnosed with laryngomalacia. I could barely pronounce it, let alone grasp all of the side effects, medications, surgical routes etc that are associated with this airway defect. Coping with Laryngomalacia Inc answered all of my questions, provided a network base that allowed me to connect with other parents in the same situation, and best of all: gave us hope that he would improve and was a strong pint-sized POWERHOUSE!
I don't know what we would have done without CWL.
Our son was diagnosed with laryngomalacia at seven weeks old, and we had no idea what to expect. No one we knew had ever heard of it.
Because of CWL, we learned not only what to expect and how to help our son, but how to advocate for his needs. On their page, we found the support we needed to get through this dark period in our lives. Our son - and our family - is thriving because of CWL.
This site and group has provided us with lots of information and guidance since our lo was diagnosed.
If I didnt find this company I would be lost. My son was diagnosed at birth. It ended up being in the life threatening category so he needed immediate surgery at the age of two weeks old. He is now my 8 1/2 month big boy
CWL has provided me with so much knowledge and support since my little one was diagnosed with LM. They provide parents with the the feedback they need to take care of our precious gifts. They have truly gave me a piece of mind that I would not have had without them.
I have found this page and fb page so helpful. My son was diagnosed at 8 weeks and is now 8 months. ♡
My daughter was diagnosed at 4 weeks with severe LM. No Dr's here could tell us or help us. They kept telling us to wait to see the ENT. This website has provided so much insight on everything. This was my main source to educate myself and others on LM. We had 2 supras done and she is now thriving. Our journey of LM is not over but I know I have a group of others to support me and understand me. That right there is the most powerful tool I could ever ask for. Thank you Stephanie and all the Coping with LM inc. team for answering so many questions and giving me support through our toughest battles.
I am so blessed to have found this organization! Nobody really understand but all of you on here. We all have different experiences with our little ones but for some reason we all connect and are able to comfort and support and give advice. I am truly thankful for all the help on here.
My daughter was diagnosed with laryngomalacia 4 weeks ago, I felt so lost not knowing much about the condition. I found Coping with laryngomalacia while researching the condition and it has made me feel more calm about a scary situation. I'm so thankful for the information and support that this page has offered me.
I learned about this site about a month ago it is amazing. My son has laryngomalcia and I felt lost. Until I found the site I realized I was not alone there are lots of mommies out there who are dealing with the same thing. It's also great because you can ask questions and you can also see the progress that these kids are my king I feel blessed after finding it.
An abundance of information and support! The place to go when you have just received the diagnosis. Love it!
They were amazing to my Superman when he went through his surgery not only did I have all kinds of encouraging words they sent us a wonderful care package I still have the card they sent Hunter and the card they sent me in our package! Hunter loves his Lu the Lamb to this day he still cuddles him! :)
I found the Coping With Laryngomalacia organization one night after my son was diagnosed. The organization has been so helpful as well as the Facebook group. I am so thankful to have found a place where other moms are going through the same thing and can help me and give advice!
Thank you LM Inc! We have been in and out of the doctors office, specialists, and ER several times over the last 4 months. Surgery is coming soon but not soon enough! I'm so grateful that I came upon LM Inc website one night while I was scouring the web looking for anything I could to give us a little bit of hope! When we go to the ER, most of the nurses have no idea what I'm talking about! So glad you are there!
This organization is wonderful and very supportive! It is great to have such wonderful people to talk to in the most important time of need.
Fantastic group. Helped me try to understand what was happening during a very worrying and stressful time. Now my little man is improving and thriving after surgery and a scary complication afterwards and i can help other people and show support when everything seems to scary.
Thankful for coping with LM! When my newborn was diagnosed I remember feeling alone,confused and exhausted. Since coming across with this program I've been able to connect with other parents, find useful tips and give my experience with other families.
The day I brought my baby boy home I knew something wasn't right about his breathing. When they told me my baby needed surgery my heart shattered. I could barley even pronounce the air way defect. I looked for answers and not only did I find them answers I was looking for but I also found comfort. Comfort in knowing I'm not alone. I had a support system! A group that actually knew what I was going through. I cried like a baby when I received my care package. All this darkness that surrounded my family and we got this piece of light. A little reminder that it will be okay! We will get through this and my baby will breathe easy when this is over with. Thank you for everything!!!!
I found Coping with Laryngomalacia the same evening my 2 week old was diagnosed. Holding her in my arms just minutes before, I was feeling terrified at this big pronouncement our doctor had made without much information. We'd set up all the necessary appointments for a week out, but I needed information and support immediately. At CWL I found all that and more. I have been very blessed by the community of people, the resources, and the hope offered. I needed to know that I wasn't alone and they have done that and more.
Coping with Laryngomalacia, inc is a great organization. It is so helpful to be able to talk to people who are going through the same thing. And have experienced firsthand the stress and struggle of life with a LM baby. I am so grateful to have found this.
My grandson have Laryngomalcaic, I found this site and it is very helpful knowing we are not alone in this fight to beat this.
This organization is awesome. We had no idea what my sons condition was, couldn't even pronounce it and the support and information has been so extremely helpful for our family. I also love that they sent our son a care package and made sure it got to him with short notice of his surgery.
I had no idea where to turn when my 2 week old was diagnosed with an airway defect. I googled his condition and thankfully this organization had answers to my questions and a full support team of mommas that were going through/had gone through the same thing. I thank God for this organization and the support they offer through care packages, online groups and words of hope.
I am so thankful that I found Coping with Laryngomalacia, Inc shortly after my daughter was diagnosed. So much great information and support! They are doing such a great job helping families and spreading awareness!
Coping with Laryngomalacia, Inc. was a blessing to me at a time of feeling lost and confused. I found them one day as I searched for answers on LM, answers I was not getting elsewhere including from our pediatrician. Thank you for being there through a very scary time! Thank you for bringing awareness! Thank you for piece of mind!
I found Coping with Laryngomalacia when my daughter was diagnosed at 6 weeks.... I was lost, confused, scared, and alone because I didn't understand what was going on with my little girl...once I found this group I felt relief...I read other people's stories that sounded very similar to mine...it made me feel like I could talk about my situation and get feed back without feeling like I am constantly repeating myself and people around me getting tired of my story.... We as parents of children with LM know the hardship of the struggle.... We fight hard because fighting hard is all we've got.... Our little ones are considered pintsize powerhouses, well then we as parents are the keeps of the powerhouse who will never stop pushing forward....
Thank You...
Nancy Villanueva, Ogden UT
When I first heard this long and crazy term that I couldn't even pronounce, I immediately began my research and learned how to properly say it while meeting with these various doctors. I came across Coping with Laryngomalaycia and immediately read everything I could on their site and on their Facebook support group. It is amazing to see these people from all over the world going through the same journey you are and not feeling alone. It was even better to hear people from your area recommend the doctor that you are using. When I had questions, I sent a quick email and they were so supportive and responded so promptly. I am so appreciative of the care package they are sending to my son and we will forever represent this organization. Thank you for all you have ALREADY done!
My son had severe LM, severe GERD, and severe sleep apnea. If it wasn't for Coping With Laryngomalacia , I'm not sure how I would have dealt with these issues. This organization helped me and my son and our family through a difficult time. Once again Thanks to this wonderful organization.
I found coping with laryngomalacia while trying to find out what this malacia thing was.. I was feeling lost and hopeless until I found them.. The support and help I got from them was amazing. When my baby was due to have surgery they immediately sent us a wonderful care package, not only for my baby but for me even tho I didn't ask for anything for myself... I would have been lost without Coping with LM!
This site allowed me to acquire a great deal of information in getting my daughter a diagnosis and a plan of action. Plus it is a great support system for parents and caregivers.
Five years ago we received a diagnosis I could barely pronounce. CWL has given me support, advice and friendships. I can't thank them all for what they have done for our family.
As a new mom I was terrified when my son was diagnosed with LM at birth. I found coping with laryngomalacia inc and finally didn't feel alone. My son is almost 2 now and doing great.
My son was diagnosed with LM at 2.5 weeks old, my husband found this facebook group and shared it with me. My son has also since been diagnosed with TM at 8months old, has a trach since 1.5 months old and a g-tube. The support and commitment from the other parents on this page and from the administration is outstanding. You don't feel alone and feel like you have people that understand what you are going through. It has helped me tremendously in the last year that my son has been going through the roller coaster of diagnoses and OR dates, surgeries, and just life in general. Thank you for all you do Coping with Laryngomalacia!!!!
I found this site trying to find information about laryngomalacia as I had heard about and suspected my daughter had it. Prior to her diagnosis, the site was helpful is helping me understand the diagnosis process and what types of questions to ask the doctors. After her diagnosis, it has been a source of support and information. We are very appreciative of the service of this organization, as well as the effort they are making in helping to bring awareness to larnygolamacia!
Wow what a fantastic organisation! I felt so lost with my sons diagnoses and had no one that understood what my partner and I were going through with our son. The night I found the Facebook page I was in tears. I felt like he world had been lifted off my shoulders and to know that there were other parents like me made me feel such relief.
My son is getting surgery this month and we just recieved his care package. The thought of my son going into surgery is dreadful but the little surgical gown, lu the lamb and the beautiful blanket makes the thought so much more positive! Nate loves his lu the lamb and runs around the house saying lu lu. We will be donating to this beautiful organisation so that many more family's like ours can receive a little ray of sunshine at such a dark time in there lives.
Thanks you so much coping with LM
Leah boorn & Michael and Nate Blakey
This group has a passionate founder and hundreds of supportive members. It has helped me in critical moments and helped me cope with the unknown aspects of this condition. I just wished our Children's Hospital had known about this group as our baby was hospitalized from birth for 104 days with little information provided. I have since told anyone I can! Thanks.
My son was diagnosed with severe lm and tm at 6 weeks old and had it not been for this site, I would have worried myself sick. There are so many people willing to share their stories and answer questions. This site has been a great sense of comfort during this trying time.
I was lost before I found Coping With LM. Now that I have found them, they are by far a great support system. They have great support words and help bring comfort to my son during his sleep study and his surgery.
I was at a loss when my child was diagnosed with lm. I had no clue what to expect and felt completely helpless, afraid and alone. All I could do was cry as I listened and watched my newborn constantly gasping for air! I found this organization one night as I was trying to research what Laryngomalacia was exactly. I found very little information until I found this organization! As I read of other families and the struggles, I realized my child and I were not alone in this fight. This organization gave me the education and strength to keep going forward in this battle. I am beyond thankful, because of this organization I have learned to do exactly as it says and that is to take a deep breath and cope!
Giving birth to you child is an experience, no words can describe. Bringing your baby home, sharing them with your family, another exciting experience. Having your maternal instincts tell you there is something wrong with your perfect little baby, yet again, an indescribable experience.
I remember sitting at 3 a.m. trying to feed my newborn Joseph, and panicking because he was choking on his milk. It was an unforgettable experience. The sound, which I know now is a stidor, sounded as if he was drowning and just coming up for air, his lips would turn blue because he'd stop breathing in between. Frightening, would be the closes word to describe it, I was terrified to feed him.
I began video taping his feedings, and took it to his pediatrician. She heard to tape and said to me "your son has something called, laryngomalacia". My son was five weeks old at this time, born at 36 weeks.
She began to give me a brief description of it, and said "don't worry he'll out grow this, he'll be fine". Although, I was reassured by her words, it wasn't enough.
I needed to find out more! Like other parents, I began an internet search on this weird thing, LARYNGOMALACIA. After I typed it into the search bar, I was immediatly lead to, Coping with Laryngomalacia's website. It was as if the gates of heaven opened up. Because of the information on the website, I was able to get a grip on my son's diagnosis. The website had a link to its facebook page, which I became a part of. It has brought me such comfort in knowing that I am not the only one! I was able to read and relate to other mothers, and read their stories or questions. I was able to use it as a sounding board for my worries and concerns.
Today when it comes to my son, I feel like I'm a pro at this. Being a part of the Coping with laryngomalacia community, I have gained the knowledge to know that my son will be okay, and that although we will have rough days, I have my little community to back me up.
Along with the support from social media, the organization hosts "laryngomalacia meet ups" where you get the chance to meet face to face and make bonds. I had the pleasure to attend one recently, and it proved to be such a blessing. We live in New Jersey, the founder of the organization, Stephanie was hosting a play date at a local park. She began to share with me why she created, Coping with Laryngomalacia. I am so glad she answered her calling, we are blessed beyond words.
Joseph and I both proudly nominate Coping with Laryngomalacia as a GREAT NON PROFIT ORGANIZATION!
This site is amazingly helpful for my wife and I, my daughter was diagnosed with LM at 4 months old and it was nice to have the help and support from others who we're going through the same issues.
My little girl stopped breathing at 10 days old .. With other symptoms clear to me but confusing to others including her pediatrician I was convinced there was something more. I found this site right before our ent appointment which I fought to get .. In between those few weeks seeing specialist upon specialist every corner we turn - another challenge .. I never felt alone .. I could post questions concerns and my craziness on the Facebook page and was able to get in touch with others that are walking my walk.. To know I am not alone and mostly to be able to gain knowledge about LM has changed my world.. Thank you for helping me feel so supported as my little baby girl fights this !
At 8 weeks my little man was diagnosed with LM. He has always had problems breathing and eating. After I got the diagnosis I felt lost and didn't know where to turn. I found CWLs facebook page and I had a sense of relief come over me and I knew I was not alone. In late June 2013 we went in for another scope and they said M's LM is much more severe then they originally thought before because the first scope was unclear because his reflux was so severe. They scheduled us for a stat Supraglottoplasty on July 2nd. M had many complications after his surgery and it landed us in the PICU for 6 days. They sent him and I a care package for the procedure that made M have something to snuggle. I still get an email here and there asking how everything is going. I feel like I have tons of people behind me and a group that knows what I am going through. This organization has helped me in so many ways and I can not ever thank them enough.
Both of ours sons were diagnosed with LM but the oldest was severe and needed surgery 4 days after being born. We were devasted, scared and full of questions. This support group helped us get through it and answered most if not all of our questions. And now that Zach is almost 3 and thriving I can now give advice and help others that were in my shoes. I don't know what we would've done had we not found CWL. #breatheasy
This organization was one of the few references of information I found when I learned my 2 week old son had Laryngomalacia. I am now 9 months into his journey and have to say that Coping With Laryngomalacia has been with me the whole time and I would have been so lost without the information and advice I got from this group. Thank you for all you do!
I struggled getting a diagnosis for my daughter and the battle was all uphill. I searched and found CWL group on FB and was welcomed openly an warmly by all the parents who know first hand about LM and the trials of this diagnosis. It is a an amazing support group and everyone is so knowledgable through their own experiences. It helped me to get through the scary and unfamiliar parts of LM and also helped answer so many questions that I had about the unfamiliar and I chartered grounds we were walking. I am in a very small town in Ontario Canada but felt so present in this community. More recently I referred another mom of a baby boy to CWL to which she has felt so welcomed as well. Everyone provides so much good here and I thank everyone from the bottom of my heart. God bless all the little ones and all of the parents. Xo
When I was pregnant with my son I dreamt of all the wonderful firsts that were to come. I never imagined that my son would be born with an airway defect that made him struggle to breath, eat and ultimately fight for every moment. I found this organization one night in the hospital when my son was 3 weeks old. He had been struggling to eat and breath since birth and then he just stopped breathing. Suddenly I found myself in a world of firsts I wanted no part of, first IVs, first feeding tube, first heart monitor first apnea monitor, first night crying all night holding him praying he keeps breathing. This organization has given me so much knowledge, strength and comfort I can't even begin to explain it. Connecting to other parents who live in this terrifying world of laryngomalacia and tracheamalacia has been and continues to be invaluable.
When our son was diagnosed with laryngomalacia CWL helped answer our questions and calm our worries. Now that our ENT has suggested surgery, we find it helpful to talk to with other parents who have experienced this. The CWL Facebook page has allowed us to better understand our sons condition and how to cope with it.
My daughter was 12 days old when I first heard LM. I knew something was wrong, but no one believed me. I finally rushed her to St. Chris ER when I realized this baby needed help. As a worried 1st time mother, I searched the internet for hours, days, weeks. Finally. I found Coping with LM. There were other moms who could relate. I vented my concerns & questions quite frequently. The outpouring of support from moms who didn't know each other from Eve, was (and is) nothing short of amazing. We were also part of the formula program. Such generous people. We couldn't be more grateful for this organization. Who else can we turn to at 4am who knows exactly what we are going through? THANK YOU!
Mary Elliott (philadelphia)
This group has helped me so much navigating through my child's condition! Great people great advice and it deserves recognition!
Coping with Laryngomalacia, Inc is an amazing organization. When your baby gets diagnosed with an airway defect you feel alone, scared, and do not know which way to turn. CWL is that shoulder to cry on, that listening ear, and that guiding hand helping you through one of the toughest times in your life. They offer advice, meetups, care packages. They are an amazing asset to have in your corner while going through such a tough time. Keep up the great work!
For 3 yrs, I worked very closely with LM patients daily and followed CWL on Facebook. I would see questions posted by LM parents and sit in the shadows stalking the responses for accuracy and helpful information. I began making it a routine to passout CWL postcards to all newly diagnosed LM patients in an effort to increase exposure of this disorder and hopefully educate the new parents of what to expect. I was never disappointed. Every single parent who has gone to this website to better understand the disorder has been educated and now feel comfortable moving forward with treatment on their little ones. Yes, some cases are much more severe than others, however, it still prepares you for the worst. This website is amazing and should continue to be recognized for helping others.
Coping with Laryngomalacia is a wonderful organization that helps parents when they are at a very low point. When you told that your child has an airway defect it is extremely scary, espically considering the lack of information about LM. This group provided support, resources, and most importantly a way to connect with parents going through or have had gone through the same thing. It is a wonderful organization.
Robin Bryant
Birmingham, AL
Mother of a now almost 3 year old LM survivor
Coping with LM, far exceed any expectations I had for a charity. From practical support (nap nanny) to emotional support (private support groups) to practical advice on the website. I. Honestly don't think I would have managed to cope with our steph and Coping with LM.
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CWL changed my life the support and advice have received I could never put limit on. My son received a blanket when ge 28days old shortly after his surgery to know a group of people were thinking of us gave us strength in our darkest hour. More recently jenson has received a nap nanny he stept for 7 hour stright first time ever. Thank you so much for all you have done for me and my baby
R.Murphy
Coping With Laryngomalcia, is a wonderful group for those of us who have a child with an airway defect. I found great comfort and support knowing there were other parents going through what I was, feeling what I felt, and knowing I was not alone made a world of difference. I am so lucky to have found such a great cause not only to be a part of but support!
When my youngest son was diagnosed with LM, I was lost. The doctors weren't overly helpful, so I went to the internet. When I found this page, I felt like I was no long crazy. I felt like all of my concerns were not only legitimate, but other people were going through it. My husband and I feel extremely supported through this group. As we figure out what the next step is for my son, I know I can turn to this group of people to help us through it all with advice and experiences of their own. Thank you!
A friend told me about this group....If it wasn't for this group i wonld not have now what Laryngomalacia was....This group has help me cope with what my son is going through... so i want to say Thank you so much...
Imagine having a child who is diagnosed with laryngomalacia and not only are you unfamiliar with this diagnosis, but you also have nowhere to turn for support and information. This organization provides comfort and support to families that are dealing with this, as well as information and the ability to be in touch with others that are in the same situation. Stephanie, the founder of this organization, works tirelessly organizing fund raisers, answering e-mails, sending handmade care packages to families, and providing support to families all over the world. As I see how many people are able to communicate and provide support for each other, I realize how proud I am to be a volunteer for this organization.
CWL has helped me so much. When my daughter was diagnosed at 1 month I was very sure what was going on. Being able to connect with other parents of babies with LM I could have questions answered in terms I understood. I was able to get real life experience stories.
I found coping with laryngomalacia after my then 4 week old daughter spent 5 weeks at mayo in Rochester Minnesota. I had just experienced life and near death with my daughter, and I felt so alone. She had undergone surgery to fix her laryngomalacia, and completely crashed the day after surgery. When we finally made it home after 5 long weeks that felt like 5 years, I opened my computer hoping and praying I wasn't the only one out there that has dealt with this. I saw a few things, basically saying laryngomalacia is a "common airway defect". Only 3 to 5 percent experience life threatening complications. This wasn't helping me, I needed people, I needed other experiences like mine, I was grasping for anything, and by the grace of God, I found coping with laryngomalacia on Facebook. Wow, I had tears flowing, and I posted on their wall. Not only did I receive the support I needed, I found some of the best friends in the world. I needed them, and they needed me. My daughter was also on a special formula, and this wonderful support group sent me formula every month. We have received so much from this, I am so excited to give back. They are my number one. I thank God for bringing them to me. I cannot thank you enough for coping with laryngomalacia. I will support them my whole life through. Love you all.
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Before I found CWL, I felt extremely alone. I hadn't heard of Laryngomalacia, and thought for sure my daughter was the only one. I thank God for tihs support group everyday. My daughter had a difficult time after her supraglottoplasty surgery, and is doing fabulous now. She still has to sleep inclined and with CWL, they had nap nannies donated to them for children that needed them, and we were one of the lucky ones!! Our daughter sleeps great and couldn't be happier. I sometimes still feel alone, but then I just head on over to the CWL support group and know that I am no longer alone. All of the WONDERFUL people on this support group, especially the founder Stephanie Paden Huesten, she is absolutely wonderful!! I couldn't be happier with them, it is the best support group by far and as soon as I am done with Nursing School I plan to give back to this group over and over again! Thank you CWL, you were definitely a live saver!
I found CWL when my son was diagnosed with LM. I didn't know the first thing about this condition until I found this page. I could ask a question in the middle of the night and get an answer. His LM was so severe that he had to have a supraglottoplasty. We spent a week in Levines Children's Hospital and one night in PICU I know that may not sound like a long time but it felt like a lifetime to us. He is now wonderful but still struggles with LM daily and I can always turn to this page for support and advice. Also, after my pint sized powerhouse had surgery (since I didn't have a computer to sign him up before because we were in the hospital) he received a care package in the mail! With lots of goodies for both him and me! CWL has a special place in my heart and always will!
I found CWL when I googled Laryngomalacia almost 3 yrs ago. My pediatrician diagnosed my then infant daughter with it, and I had never even heard the word in my life. I asked him to spell it for me and researched away. Not a lot came up online, other than a few Dr reports.... And then I saw it was a group on Facebook! It was so comforting to know there were others out there dealing with the same things we were. The mom to mom help, advice, and experience was priceless and still is 3 years later. We have become a malacia community. a support group, and close friends all around the world!
THE BEST non profit ever!!!!
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Hello,
I have to say CWL has been a life saver for me and my family. I have a baby daughter that was diagnosed with LM very young. She had such a hard time breathing and I was so worried for her everyday. Her paediatrician said it was a watch a wait period, which was excruciating for me. And my Family Dr could hardly pronounce Laryngomalacia!! Through the guidance of Stephanie and other moms on the page, I had a lot of questions answered and knew what tests were needed and what they would entail. We got through the first year of my baby's life with confidence support and knowledge. Thank you CWL!:)
My daughter was diagnosed with LM and this group was fabulous with all the wonderful work they do. What an amazing group of people that come together to help us scared moms.
My son was born with LM and it turned our world upside down. CWL was there every step of the way with support. We are thankful for all they do for LM babies and LM families. They made an unimaginable event in life a little more bearable. Thank you CWL!
I saw coping with LM on the Internet one day and that's been a few years ago. And been reading up on the Facebook group ever since. . Every time I needed help or advice they were always there for me. When my daughter was still alive they sent me a box with so many little presents in. When I went through each item I started crying. I couldn't believe that people I have never met before could care so much. The cards were filled with heart felt words and support. Hand made knitted blanket and so many other items. I didn't know how to say thank you enough. And when my daughter Mika passed away they sent off a beautiful white dove into the sky for her in remembrance. These people that are part of coping with LM esp Stefanie has been a big part of my life since day one . And what I've decided to do is start a coping with LM in South Africa. To help parents and babies in S.A. as we in S.A don't understand what this condition is all about. Just want to say thank you to the team of coping with LM!!!! You are all amazing angels!!! ♡♡♡♡♡
I found CWL when my daughter was diagnosed with LM. They were extremely helpfully with information and helping get answers to my questions. They sent my daughter a very nice care package before her Bronchoscopy and even sent me a gift. I don't know what is would do without their support.
I only wish I had found this non-profit sooner! For the first year of my son's life, I felt very alone. I did not know anyone who had a child with challenges similar to my own. When I came across CWL one night, I was not sure what to expect, but I was almost immediately relieved that I had found others who were in a similar situation. Stephanie, the founder is wonderful. The little care package we received was such a sweet gesture, and I love that I always have the opportunity to swap stories, get advice and I now know we are not alone on this journey! Thank you CWL!
I'm writing basically to say thank you for all the support you provide families. Before my son was diagnosed with laryngomalacia I had never even heard of it. I am amazed and blessed to say my son is quickly heading towards full healing. At his last ENT appointment she did another scope and said he was almost fully grown correctly together. I no longer have to check my son fifty times during the night to make sure he's breathing. No more panic those few times he wasn't. There is nothing scarier. The support you offer families is priceless. This was the reason I brought you to the attention of the Amazon smile program a couple months back. I see that worked out and I couldn't be happier. Even though I was never a huge poster on the site I daily still read through and pay for those families still going through what we did and some in a much larger way. Your blankets and gift programs are fantastic. I have recruited my few crocheting friends to work on some blankets. Even when I didn't comment being able to see and read other parents going through the same things made it seem somehow more doable and little less scary and less lonely. So, thank you and keep up the amazing work. Jori Ludtke-Smith
Coping With Laryngomalacia is a great organization that helps bring about awareness of this uncommon defect. It is great for parents because it is a useful resource of information to help them through tough times and give them hope. Keep it up!
Copying with Laryngomalacia has helped my family through some very confusing times. They have offered support and insight on the many struggles that our baby faces. They generously sent her a care package to provide comfort during her hospital visits. It is so nice to have found a supportive community to travel with on our little ones journey to Breathe Easy.
My daughter is 20 months and was dx at6 weeks and underwent numerous surgeries, procedures, etc. She still has a way too go bit it has been amazing to have this organization to go to with other families who understand. Lots of support!
Before I found CWL, I was a lost mother looking for understanding and other parents who could relate to what my son and I were going through. I was BEYOND elated that I found CWL and became very involved with this non-profit.
My amazing son Evan was misdiagnosed for 16 months until I finally found out the correct diagnosis. My son had been dealt a difficult deck but with a lot of love, surgeries and outstanding doctors.... he is better! He just turned 5 years old and is beyond perfection.
I owe most of my sanity throughout this process to CWL and all of the members who share their stories, tips, tricks and doctors.
Thank you CWL for ALWAYS being there for my sweet boy and I!
This organization has created an incredible community for family struggling with LM. Through their incredible programs of donations grants blankets hospital services and more, they continue to raise the bar on understanding and raising awareness for this incredibly difficult defect! So proud to be affiliated with this incredible nonprofit!
We have had a long journey with our son who was diagnosed with Laryngomalacia at 4 months old after we struggled for answers for so long. Very few drs in our area know much about LM so we travel out of state for our son's care. When we were told he needed to have surgery at 6 months old I was a mess. Then I found CWL! The support we have received from them has kept me going when I didn't think I could anymore. We are headed back into the OR for the fourth time (2nd due to the LM) and CWL is there again. Even for the surgeries that weren't related to the LM, they were there!
My daughter had severe lm as a baby, and as a three year old, still struggles. Having this group as support has been amazing. It is reassuring to be able to share my worries and triumphs (no matter how tiny) with parents who get it- because not many parents in my small town understand the fear of having a child who can't breathe.
the evening after my daughter was born with severe LM, i was inconsoleble. i felt scared and alone in my hospitalbed knowing my daughter laid two floors down and i could not reach her if she needed me. she was so low in her sats i feared for her. then i went looking for information and found CWL. with CWL i found a family of sisters and brothers who were there for me in these hard times. during the last 2 years with 4 children with LM, i learned from the others what to do, what to expect and how to cope with the long nights in the icu. i hope the new moms and dads with the same fears as i had can learn from my experiances as we all talk together and join forces to help our kids. we are all looking out for eachother and are there when needed. when the carepackage for one of my children arrived containing LU and a blanket etc. tears welled form my eyes and even i wasn't forgotten with a nice note and some mary kay products. i'm gratefull for the help and the lessons i learned form stephanie, her team and the other moms. with you steph and them i would never have the knowledge i do now so i can help my kids during these challenging years behind and ahead of us.
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my daughter was diagnosed with LM at birth. after a week in the hospital she was released. when she was taken ill and was hospitalized again; i needed information and i as a mother felt all alone. by coincedence i found CWL and with their support and great information i don't see my childs future as bleak as i first tought and i'm not afraid anymore thanks to the information. also talking to other parrents and sharing solutions helped me alot. knowing you are not alone in your struggle is very comforting.
When you're lost and looking for answers they've been there. When your facing surgery; scared, hurt, lost. They send you a feel good care package. My son recieved socks, a stuffie, a card, and a hand made blankie. It's comfort when there is no comfort. They even sent a special gift for me. A stressful time from diagnosis to new problems or issues this nonprofit does nothing but helps and serve. I thank them a lot!
I found Coping With Laryngomalacia Inc one night as I layed in my bed with an empty bassinet next to me. My daughter was stuck in the NICU with some condition I could not even pronounce! I read stories and asked questions and then asked more questions, there was always someone to answer, even in the middle of the night. My daughter is 15 months now, if it was not for this page I would have lost my sanity. She still struggles with LM everyday, and I am reassured because I know there is a caregiver out there somewhere who is ready and willing to support me in my time of need and I am ready to do the same for them!! Thank you CWL for helping my daughter and I survive LM.
Fantastic organization! They are providing such a positive yet informative site! Dealing with my sons condition is far less lonely and I feel less isolated As a result!
The support group has been such a blessing as we have been through our journey with our baby boys condition. The information and support we got from this group has been so helpful. Information on this condition is hard to find. They sent a care package to us for our sons surgery that was absolutely adorable and included pampering gifts for mom. We are so happy we found this organization!
This incredible nonprofit has created a community of families whose children are suffering from the same medical condition. It is the only place I could find to ask questions, get information, advice, and support from other parents who are going through the same thing. Everyone is kind and understanding and supportive. This nonprofit also has different programs that parents can apply to and receive donated funds, supplies, etc. This is a wonderful organization!
Steph, you're awesome and CWL is proof. I'm very proud of you for using your own experiences to help others affected. Keep it up!
My daughter was diagnosed with LM at 4 weeks. I was told that it was mild and she would grow out of it. I let it go and continued to deal with eating issues. It took her 1 hour to finish a 4 oz bottle. She was burning more calories trying to eat than she was consuming. It wasn't until after she started to lose weight that her doctor sent us to an ENT. Up until this point I could not find a lot of information for LM and what the expectations were of surgery or letting her grow out of it. I recieved no feedback from her doctor or ENT. Her ENT said lets do surgery but provided no pros or cons. I received far more information from Coping With Laryngomalacia, Inc than anyone else. I learned so much from other parents and the website alone. This is an amazing organization for families that are trying to work through LM. My daughter became a new baby right after surgery and started to eat with no problems. I probably would have said no to surgery if I didn't have all the information I needed and the doctors didn't provide it this organization did. Thank you.
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My daughter was diagnosed with LM at 4 weeks. A month after that she started losing weight. I was refered to an ENT. The ENT did a scope and suggested surgery. I scheduled surgery but in the mean time I was trying to find information and details about LM and the surgery. I found websites that talked about LM and explained what it is but nothing gave me answers I was comfortable with. i researched this for weeks when I came across Coping With Laryngomalacia. There website was so helpful and answered so many of my questions. They have great programs you can apply for. Their facebook page has other parents with the same problem. I would ask a question and get answers and experiences from other people. At this time I was still debating if I should do the surgery because she had mild/moderate LM. After talking to other parents and reviewing the website I felt like I was educated enough to make a good decision. The surgery was the best thing I could have done for my daughter. She is a new baby with more energy to act like a normal 3 month old. People in general don't speak enough about different issues for whatever reason. To see somebody with the same idea, to get the information out there, was refreshing. Thank you!!!!
Coping with LM was a big help to me. I was able to know what to ask the ENT doctor to ensure my baby was having the diagnostic tests she needed. The founder and president was quick to email me back with answers and support. She gave me the name of an organic thickener for my baby's milk when I couldn't find one I felt was suitable. It's nice to have this resource for support when so few people in our lives know of LM. Thank you!
I no longer felt alone when my baby was diagnosed with LM after finding CWL. Stephanie is a great team leader and great support. They are doing a great job in helping ppl like us feel at peace. Thanks for CWL
This is an unbelievable website! Stephanie does an extremely wonderful job getting everything she can out there about LM! She works very hard and her determination goes a long way! With being a mom of 3 little kids I don't know where she gets her time and energy to keep it going but she does with many new things coming up all the time!! Steph... Your awesome at this and keep up your amazing work!!
After finding CWL my husband and I no longer felt alone in the LM fight. My child was dx with LM at 6 weeks and we had no idea what this condition was or how hard it was going to be to deal with it. The wonderful team and members of CWL helped us through and gave us answers to questions that even my daughters Drs couldn’t answer. My daughter rec’d a beautiful blanket and socks when she went through her supraglottoplasty, along with kind words of encouragement. The blanket is something that she carries around daily; it became a part of her support system. The support given to us moved me so much that I decided to become a volunteer with CWL to offer moms and dads any help that I could give. I am so thankful for the assistance and support we have received from CWL.
To me CWL is the single, best source of informaton on LM, BM, TM & related illnesses on the web. On my sons diagnosis back in 2008, there was no support groups. Then finally a guiding light appeared, which has regained the sanity of many LM parents out there. For any parent whos child is affected, they will know .... this is a fight. The condition is only now being taken more seriously & ENTs are becoming more aware, this can be a testiment to the hard work CWL do. The additional links to surgery support packs, shout outs on important dates add to the overarching support they give to parents. Thank you CWL.
When we were first given Rylan's diagnois of Laryngomalacia, the first thing I did was google it. I was looking for information & support. We were scared & desperate for someone with experience to help guide & reassure us. We found all of that, and more, in CWL. From the very beginning they were able to help us. Breastfeeding support, related issues (FTT, reflux), sleeping positions, etc - they were able to answer all of our questions. And it was a personal experience. I'm still in touch with the volunteer who very first helped me when Rylan was FTT & having a hard time breathing & feeding. We applied & received a Nap Nanny, which helped Rylan be able to get good rest. We also received formula & formula coupons from CWL. The other members of CWL were able to tell me what to expect from our different appointments - very helpful! CWL has helped us tremendously. I'm not sure how we would've made it thru this first year without their support. I highly recommend CWL for anyone who has a child that has been diagnosed with LM, TM or BM. Thank you CWL!
What would I do without CWL! Not only does CWL provide useful information on laryngomalacia (which helped me diagnose my daughters condition when Doctors had no idea) but also is an invaluable support resource where families going through similar situations can connect and ask questions in a friendly and non-judgemental environment. Laryngomalacia is not something you hear about everyday so it is amazing to find a support group set up for those struggling with laryngomalacia, tracheomalacia, and bronchomalacia. It has made me positive about my daughters prognosis and it is great to get support and advice from others who understand what I am going through. CWL also donated a Chibebe Snuggle Pod to my daughter so I am ever so grateful. Thank you Stephanie and CWL!
CWL has been one of the only comforts my husband and I have had in our daughters short 6 months of life so far. When no one listened to us, and doctors spoke at us, not with us...CWL has been somewhere we can go to ask questions, and just feel like there are other parents and families going through the same things. If others can get through it, so can we. If it weren't for this organization...sure, we would be surviving, but it this experience would be far more scary and lonesome. We are so grateful to CWL!
Before I found CWL I felt very alone, Unless you have been the parent of an LM baby you do not understand what these babies, and parents are going through. CWL has been a great outlet and place to get advice from other Parents who have gone through this or are going through. Thank you Stephanie and CWL members for your support and advice
This nonprofit is a wonderful support group for families struggling with laryngomalacia, tracheomalacia, and bronchomalacia. It has given me the strength I once did not have. I have other Mom's that can help me and understand what I'm going through, whether it's from being the primary caretaker of my kids or from having to deal with incompetent Dr's this group has people that KNOW what I'm going through and it's been really awesome feeling supported and a sense of hope and belonging.
I have not been personally affected by LM until I met Seraphina. She has been through more in one year of life than I could ever imagine. Her strength, love of life and amazing mother have inspired me to help any way I can and, more importantly, to spread the word of LM! CWL began a movement of bringing a rare defect (I dont care what the professionals say-it IS rare) into light and the support it provides is unmeasurable. CWL and its founder, Stephanie, truly are inspirational. If more people were like Stephanie the world would be a pretty incredible place.
My first meeting with the word Laryngomalacia was over 17 years ago and didnt meet anyone who had heard of it back then....... Infact alot of people did not even know what a Larynx was :) then 14 years later my much awaited child had the familiar stridor and I knew exactly what it was thats when LM became apart of my everday life I then had another son 2 years later who also has LM the last 3 years of our lifes LM has been there it hasnt left yet along with its relatives reflux and apnea, desaturation and squeak ...... Its been lonely until i found this fantastic support group full of parents who know just what LM is and how it can affect life I so wish something like it was around when I first met LM thank you Stephanie for creating such a fantastic support group
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copingwithlm 01/05/2022 Cassieelynn, we are so happy to hear we helped you and your family cope! Thank you for being part of our #strongerthanstridor community.