Over 1.8 million nonprofits and charities for donors, volunteers and funders

2020 Top-Rated Nonprofit

Coping With Laryngomalacia, Inc

7,478 pageviews

Add to Favorites

Share this Nonprofit

Donate

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

268 Stories from Volunteers, Donors & Supporters

1 Caitlyn E.

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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 !

1

Client Served

Rating: 5

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!

1

Client Served

Rating: 5

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!

1

Client Served

Rating: 5

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!

1 Victoria 'Kukarola' B.

General Member of the Public

Rating: 5

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!

1

General Member of the Public

Rating: 5

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!

3

Client Served

Rating: 5

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.

3 Christina E.2

Client Served

Rating: 5

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.

3

General Member of the Public

Rating: 5

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

2

General Member of the Public

Rating: 5

They have helped me with so much support and have given me a ton of advice.

2 cici8002

Donor

Rating: 5

This charity goes above and beyond. They make sure no kiddo fights alone.

Previous Stories
4

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.

2

General Member of the Public

Rating: 5

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

1 Lindsay H.3

Client Served

Rating: 5

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

1 Sara B.6

Client Served

Rating: 5

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.

1 Kirstie H.

Client Served

Rating: 5

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

1

General Member of the Public

Rating: 5

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.

2

General Member of the Public

Rating: 5

This group has been so amazing and supportive! My daughter has laryngomalacia and was recently diagnosed tracheomalacia.

2 Emily M.10

General Member of the Public

Rating: 5

Most helpful, kind and passionate group of people!

3

Client Served

Rating: 5

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.

1 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.

2 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!

2 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.

3 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 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

3

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

2 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.

2

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❤️

2 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.

3

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!

2

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!

2

General Member of the Public

Rating: 5

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

2 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.

1

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.

1 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!!