Coping With Laryngomalacia, Inc

Rating: 5 stars   68 reviews

Issues:

Location: PO 313 Port Monmouth NJ 07758 USA

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!

2014 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars   Featured Review

1 person found this review helpful

I found Coping With Laryngomalacia Inc one night as I layed in my bed with an empty bassinet next to me. My daughter was stuck in the NICU with some condition I could not even pronounce! I read stories and asked questions and then asked more questions, there was always someone to answer, even in the middle of the night. My daughter is 15 months now, if it was not for this page I would have lost my sanity. She still struggles with LM everyday, and I am reassured because I know there is a caregiver out there somewhere who is ready and willing to support me in my time of need and I am ready to do the same for them!! Thank you CWL for helping my daughter and I survive LM.

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Rating: 5 stars  

1 person found this review helpful

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.

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Rating: 5 stars  

1 person found this review helpful

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.

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Rating: 5 stars  

1 person found this review helpful

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.

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Rating: 5 stars  

1 person found this review helpful

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!

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Rating: 5 stars  

1 person found this review helpful

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!

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Rating: 5 stars  

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.

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Rating: 5 stars  

1 person found this review helpful

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 !

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Rating: 5 stars  

1 person found this review helpful

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.

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