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2017 Top-Rated Nonprofit

Coping With Laryngomalacia, Inc

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Nonprofit Overview

Mission: to provide support, strength and education for families coping with LM, TM and BM. Located in Port Monmouth, New Jersey (USA)...serving families worldwide.

Results: Thanks to our amazing donors, we have sent close to 500 care packages all through out the USA, Canada, The United Kingdom, South Africa, Australia and The Netherlands!

Target demographics: families worldwide

Direct beneficiaries per year: over 1,000 families

Geographic areas served: Port Monmouth, New Jersey

Programs: 24/7 online support Live online chats Breathe Easy Care Package Program Pint-Sized Powerhouse Grant Program Malacia MeetUps CPR training Breast, bottle & tube feeding support Tracheotomy tube education and support Awareness apparel and merchandise Education resources and more!

Community Stories

63 Stories from Volunteers, Donors & Supporters

3

Client Served

Rating: 5

This is an amazing group that has given us so much more information than we have ever received from any medical professional. Our ENT is wonderful but we found him after reading the stories of other LM families and deciding that we needed to speak up at the pediatrician's office. We are grateful for the support shown to us through their wonderful facebook page as well as a very kind care package we received before a surgery. This is a nonprofit that truely supports it's cause.

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.

Sarah D.1

General Member of the Public

Rating: 5

This organization has helped me in so many ways!! My daughter was diagnosed with LM at 5 weeks old, and it has been a long 3 months since! She is scheduled to have surgery in the next week and they sent me a very thoughtful care package, to help us cope with everything.
I would have been so lost without this group and all the information I have learned. Because of them I have been able to fight for my daughter and get her the care she needs.

General Member of the Public

Rating: 5

So supportive and extremely helpful. Our son was diagnosed with tracheomalacia at 1 week old, then laryngomalacia at 1 month, along with gastric reflux, cyanosis, sleep apnea, dysphagia, aspiration and asthma. Try to Google that for help! (sarcasm intended). Then our son had a supraglottoplasty and epiglottopexy at 2 1/2 months old. This non profit organization sent us a rushed care package to help our baby during his hospital recovery icu stay. The love, support and education have been amazing!!! Our son is now scheduled for revision surgery and I feel so much stronger this time around because of this organization and group of people! So blessed ❤

General Member of the Public

Rating: 5

My son had breathing problems and these people sent us gifts and information. I found it to be helpful. Joey Barreras

1 Taylor W.

General Member of the Public

Rating: 5

I've witnessed Coping with LM do some amazing things for parents and children that are dealing with Laryngomalacia, they are a very kind organization & very giving! These hard working parents, grandparents, aunts & uncles that go out of there way to help these families deserve way more than just a high rating! They are an amazing group of people!

1

General Member of the Public

Rating: 5

This charity has helped a great many of people I know in need of comfort, knowledge and guidance through their son's surgeries and many diagnoses. I love to donate to such an incredible organization!

Cristina N.

General Member of the Public

Rating: 5

When my son was diagnosed with laryngomalacia when he was 6 weeks old, it was incredibly overwhelming...and there was very little information out there. I am so thankful for this group as we navigated through the scary unknowns. We received a care package in preparations for my son's surgery, and it was so heartwarming to know we were thought of, and cared for, by a community that understands our journey.

Previous Stories

Client Served

Rating: 5

There aren't many resources out there for laryngomalacia. This was my go to group when my son was first diagnosed. They have been so helpful through the diagnoses, treatment, surgery, and recovery.

General Member of the Public

Rating: 3

Hi I am Girlie Deneros from Philippines, upon checking in the internet about Laryngomalacia, I encountered your website, and I would like to ask if you could also help my 1 year old son, who was born with multiple congenital anomalies and diagnosed with Laryngomalacia. Baby Ramilan also has both micropthamia( small eyes) which means from the time he was born he is totally blind. from 4 months until now, his feeding is thru NGT (tube feeding). the doctor already advised us to shift to PEG feeding, but due to his recurring Pneumonia his operation is always postponed. I hope thru this website my son could be able to feed thru his mouth, if it is possible to undergo operation to treat his laryngomalacia. I noticed also, that during his sleeping, he sweat a lot, suspect that he might also has sleep apnea, but I was not able to discuss that to his pedia. I hope you could help me and my son. Thank you so much and more power!

1

General Member of the Public

Rating: 5

My sweet little man was diagnosed with Laryngomalacia at 3 weeks old. After getting a second opinion and a Dr we trusted we decided to go the surgery route at 6 weeks old to make life a little easier on everyone- especially him. Without the guidance from Stephanie and a few other moms whose babies have LM as well I wouldn't have known where to start. This group helped me do my research, find ways to make my son more comfortable, and overall just made me feel like I wasn't helpless and lost. Before his surgery we received a letter and a care package with all these awesome goodies inside. ( Jace loves his Lu the lamb and his base ball lovie to this day!) I also got great advice and an idea of what to expect going in to the ICU after everything was done. After surgery I got an overwhelming amount of love, prayers, support, and advice. I would have no idea where we'd be without this group and I'm forever hratsful and dedicated to raising awareness for our little pintsize power houses. ❤️

1 Writer

General Member of the Public

Rating: 5

Coping With Laryngomalacia gave me more support and education about my son's condition than I could have ever asked! The community of parents I have met that are going through the same thing has been amazing. Thanks to CWL, I knew exactly what questions to ask my son's ent and I felt comfortable because I was already familiar with his condition. Thank you so much, CWL!

Previous Stories

General Member of the Public

Rating: 5

I am so grateful for all of the support, resources, and information I've received through CWLMI. I was truly clueless about my son's diagnosis and don't know what I would have done without this organization and their support group!

General Member of the Public

Rating: 5

They are a great support for new parents of kiddos with LM.

1 Nila G.

General Member of the Public

Rating: 5

This organization has helped our family so much. The information we received helped us advocate for the best for our LM baby, and the support kept us strong through it all.

1

General Member of the Public

Rating: 5

Coping With Laryngomalacia is a great nonprofit organization that provides tremendous support and resources for families coping with LM, TM and BM!

1 Kristen85

General Member of the Public

Rating: 5

Our little man has come so very far!! Being part of such an amazing group who understands exactly what you are going through is so helpful and reassuring. Reading other people's stories and seeing what they have/are going through, really makes you red not alone. I know there are days I just feel like I'm by myself, and no one gets it. Then, I remember this group and know I'm not alone at all!

1

General Member of the Public

Rating: 5

I'm from Malaysia, currently my 6m first twin admitted in General Hospital. He had been diagnose with Laryngomalacia..we admitted since 2/5/2016 until now... currently using bypap via tracheostomy... i woukd like to join this support group hoping to gain more knowledge regardong my son condition.

1

General Member of the Public

Rating: 5

When we got the diagnosis of laryngomalacia we didn't even know how to pronounce it let alone what it was. I asked the Dr. For more information but was given a small handout. So I searched on Google and coping with laryngomalacia came up. I clicked and began reading and found relief that I have help. So many awesome resources and families going through this along with us. We were not alone. It was such am amazing feeling to know that we were not alone and had resources to seek. This journey was very scary at first but now we have a wonderful community to help us.

1

General Member of the Public

Rating: 5

I'm from the UK my son was diagnosed at 5 weeks old he's now 16 months and his condition is ongoing. He is still on repeat perscription for gaviscon and seems like he developing a sleep disorder which at first I thought may be down to having a new sibling. He wakes continuously through the night his breathing still loud that's if it doesn't stop for a bit and seems like an irritable kid during the day. I still don't fully understand the condition it still scares me and I still don't find it so "common". Well done to this charity will spread the word through social media.

Sally75

General Member of the Public

Rating: 5

Invaluable support at a time when we were thrown into the unknowns of a airway defect. Having never even heard of LM, TM, BM, GERD, supra, aortapexy someone was always there to offer support and advice and 16 months in I feel now I may even be able to offer some support to new members starting the journey.
This organisation allows me to do that and they ask nothing in return. Sally

1 Sarah301

General Member of the Public

Rating: 5

When my son was diagnoses around 10 days old I was terrified. The first doctor we saw didn't offer much information, my family has no idea what it was and just commented on his scary my baby sounded. I found this group and finally found the information I needed to help him, found him a specialist, found the support I needed to care for my man! This is a great organization!

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.