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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

239 Stories from Volunteers, Donors & Supporters

1 Lauren McCabe H.

General Member of the Public

Rating: 5

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.

1

Client Served

Rating: 5

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.

1 Krista R.

General Member of the Public

Rating: 5

This page was a lifesaving, invaluable resource for me! It is so helpful to parents of newly diagnosed babes with all stages of LM!

1

Client Served

Rating: 5

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!

1 Nikki H.4

Client Served

Rating: 5

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

1

Client Served

Rating: 5

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!

1 Jackie B.3

Client Served

Rating: 5

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.

2 YunielSahe Alonso N.

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

I cannot express how wonderful this organization is. They are constantly searching for answers for us. From help with insurance questions or even help with what to ask your doctors at what appointment. They have guided me so much and I’m forever grateful.

1 Vera H.

Client Served

Rating: 5

So special. Even in the Netherlands!!!
Out daughter had had a Supra en Lu the Lamb went with het for support

2

Client Served

Rating: 5

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

1 Heather D R.

Client Served

Rating: 5

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.

1

General Member of the Public

Rating: 5

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❤️

1 Heather Chapelle B.

Client Served

Rating: 5

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.

2 Morgan K.3

Client Served

Rating: 5

We are so thankful for the care package we received in July. Our little man had his Supra and is improving daily.

1 Danae Pierson W.

Client Served

Rating: 5

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.

3 Autumn M W.

General Member of the Public

Rating: 5

This group has been such an amazing help for my best friend and her family and it’s such a loving community!

2 Abbagayle K.

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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!

1

General Member of the Public

Rating: 5

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!

1

General Member of the Public

Rating: 5

Coping with LM gave us something to look forward to when we were scared of the unknown.

1 Kashmir B.

Client Served

Rating: 5

Gave so much comfort in such a trying time. Thank you CWL!

1

General Member of the Public

Rating: 5

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!

Client Served

Rating: 5

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.

Jessica Lauren G.1

Client Served

Rating: 5

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!

Tanya S.4

Client Served

Rating: 5

This group is so supporting to our family. Cannot imagine going tough this tough time without those amazing people in this group.

Andrea R.4

Client Served

Rating: 5

This non profit helps so many parents! Thank you for all you do.

Salina Hew C.

General Member of the Public

Rating: 5

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!

Jamie Lynn W.1

General Member of the Public

Rating: 5

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 ❤️

Client Served

Rating: 5

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.

1 Alexis Rochelle T.

General Member of the Public

Rating: 5

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.

Client Served

Rating: 5

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.

Tara M.3

Client Served

Rating: 5

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.

Lindsay L.1

Volunteer

Rating: 5

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