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2019 Top-Rated Nonprofit

Coping With Laryngomalacia, Inc

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Nonprofit Overview

Mission: To provide worldwide support, strength, and education for families coping with laryngomalacia, tracheomalacia, bronchomalacia, and pharyngomalacia

Results: As of October 2019: 263 care packages given worldwide. 45 custom airway pajamas given worldwide. 15 Chibebe Snuggle Pods given through the USA and Australia. 9 Malacia Meet-Ups through the USA. Over 4,000 families supported through the online Caregiver Support Group.

Target demographics: families worldwide

Direct beneficiaries per year: over 4,000 families

Geographic areas served: Port Monmouth, New Jersey

Programs: Breathe Easy Care PackageProgram, Project Pajamas, Chibebe Snuggle Pod Program, Malacia Meet-Ups, online support group, and educational resources.

Community Stories

247 Stories from Volunteers, Donors & Supporters

3

General Member of the Public

Rating: 5

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.

1 Amy_258

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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!

3

Client Served

Rating: 5

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!

1

Client Served

Rating: 5

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.

Client Served

Rating: 4

This site and group has provided us with lots of information and guidance since our lo was diagnosed.

1 Shantell W.

General Member of the Public

Rating: 5

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

1 Nicole141

General Member of the Public

Rating: 5

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.

General Member of the Public

Rating: 4

I have found this page and fb page so helpful. My son was diagnosed at 8 weeks and is now 8 months. ♡

Board Member

Rating: 5

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.

Cecilia8

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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.

Whitney A.

Volunteer

Rating: 5

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.

General Member of the Public

Rating: 5

An abundance of information and support! The place to go when you have just received the diagnosis. Love it!

Matt N Amber T.

Client Served

Rating: 5

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! :)

Client Served

Rating: 5

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!

General Member of the Public

Rating: 5

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!

Client Served

Rating: 5

So grateful for the support of this organization.

General Member of the Public

Rating: 5

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.

General Member of the Public

Rating: 5

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.

Client Served

Rating: 5

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.

Cassie8

Client Served

Rating: 5

Thank you so much for always being there for the rough and best times.

Previous Stories

Client Served

Rating: 5

I love this foundation. The founder is an amazing woman and i feel like i have a great amount of support since i have found Coping with LM. They are there when i don't want to do next, they have a great advice.
Thank you for all you guys have done.

Client Served

Rating: 5

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!!!!

Tiffany61

Volunteer

Rating: 5

Cwl has helped me and my family through all of our hard times... They are truly a god send!!

Krissy R.

Client Served

Rating: 5

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.

Jade R.

General Member of the Public

Rating: 5

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.

Ashley146

Client Served

Rating: 5

Love coping with Laryngomalacia , lots of support threw dealing with this struggle.

General Member of the Public

Rating: 4

My grandson have Laryngomalcaic, I found this site and it is very helpful knowing we are not alone in this fight to beat this.

1 Courtney54

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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!

1 Holly71

General Member of the Public

Rating: 5

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!

2 Nancy213

Volunteer

Rating: 5

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

KLKS828

Client Served

Rating: 5

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!

2

General Member of the Public

Rating: 5

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.

1 Kim_175

Client Served

Rating: 5

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!

1

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

General Member of the Public

Rating: 5

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!!!!

1

Professional with expertise in this field

Rating: 5

I am a respiratory therapist with two daughters diagnosed with LM. I am so thankful for the site!

1 Bethany14

Client Served

Rating: 5

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!

1

Client Served

Rating: 5

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

1

Client Served

Rating: 5

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.

1 Debbie156

Client Served

Rating: 5

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.

1 David277

Client Served

Rating: 5

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.

1

General Member of the Public

Rating: 5

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!

1

Client Served

Rating: 5

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!

Jordan31

General Member of the Public

Rating: 5

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.

Samantha55

General Member of the Public

Rating: 5

We found coping while googling desperately for answers . They have been an answer to our prayers

1

Client Served

Rating: 5

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 !

1 Audrey21

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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

1

Client Served

Rating: 5

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!

1

Client Served

Rating: 5

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

1 Jessica178

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1 Mary Frances E.

General Member of the Public

Rating: 5

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)

1 Olivia L.

General Member of the Public

Rating: 5

This group has helped me so much navigating through my child's condition! Great people great advice and it deserves recognition!

1 Shana3

General Member of the Public

Rating: 5

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!

Professional with expertise in this field

Rating: 5

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.

Client Served

Rating: 5

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

Rebecca234567891011

Client Served

Rating: 5

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.

Previous Stories
3

General Member of the Public

Rating: 5

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