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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

Lauren Ririe A.

Client Served

Rating: 5

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!!!

1

General Member of the Public

Rating: 5

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.

1 Jo B.3

General Member of the Public

Rating: 5

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

1 Richi H.

Client Served

Rating: 5

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.

1 Nana V.

Volunteer

Rating: 5

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!

Previous Stories
1

Volunteer

Rating: 5

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

9

Client Served

Rating: 5

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

1 Shawn N Brandy K.

Client Served

Rating: 5

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!

Client Served

Rating: 5

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!

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.

2 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!

2

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

2

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.

3 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.

2 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.

5 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!

3 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.

2

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.

2

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!

2

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!

2

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.

1 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!

1 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.

1 Andrea R.4

Client Served

Rating: 5

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

1 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!

1 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 ❤️

1

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.

2 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.

1 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

2 Katie Altman S.

Volunteer

Rating: 5

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!!

Client Served

Rating: 5

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.

Heather Robertson M.1

Client Served

Rating: 5

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!!!

Emma H.1

Volunteer

Rating: 5

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

Cynthia C.1

Client Served

Rating: 5

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!!

Client Served

Rating: 5

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!

General Member of the Public

Rating: 5

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 .

General Member of the Public

Rating: 5

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

1

General Member of the Public

Rating: 5

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!!!

1 Alexa Skye M.

Client Served

Rating: 5

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.

1 Brit T.

General Member of the Public

Rating: 5

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.

Rebecca G.1

Client Served

Rating: 5

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.

2

General Member of the Public

Rating: 5

This nonprofit has been amazing. My 18 month old was diagnosed with Laryngomalacia and the support we received was astounding.

2 Misty E.

Client Served

Rating: 5

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!

2 Andrea B.4

Client Served

Rating: 5

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.

3 Shana S.1

Client Served

Rating: 5

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!!

2 Mary H.2

Client Served

Rating: 5

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.

2 Writer

General Member of the Public

Rating: 5

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.

Previous Stories
3

Client Served

Rating: 5

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!

Client Served

Rating: 5

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

Kayla O.1

General Member of the Public

Rating: 5

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.

Donor

Rating: 5

This is an amazing non profit organization, my baby got diagnosed with LM and their website and support group are phenomenal.