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.
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.
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!