Coping With Laryngomalacia, Inc

Rating: 5 stars   80 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!
2015 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

When I first heard this long and crazy term that I couldn't even pronounce, I immediately began my research and learned how to properly say it while meeting with these various doctors. I came across Coping with Laryngomalaycia and immediately read everything I could on their site and on their Facebook support group. It is amazing to see these people from all over the world going through the same journey you are and not feeling alone. It was even better to hear people from your area recommend the doctor that you are using. When I had questions, I sent a quick email and they were so supportive and responded so promptly. I am so appreciative of the care package they are sending to my son and we will forever represent this organization. Thank you for all you have ALREADY done!

When was your last experience with this nonprofit?

2015

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Rating: 5 stars  

1 person found this review helpful

I found coping with laryngomalacia while trying to find out what this malacia thing was.. I was feeling lost and hopeless until I found them.. The support and help I got from them was amazing. When my baby was due to have surgery they immediately sent us a wonderful care package, not only for my baby but for me even tho I didn't ask for anything for myself... I would have been lost without Coping with LM!

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Rating: 5 stars  

1 person found this review helpful

As a new mom I was terrified when my son was diagnosed with LM at birth. I found coping with laryngomalacia inc and finally didn't feel alone. My son is almost 2 now and doing great.

When was your last experience with this nonprofit?

2015

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Rating: 5 stars  

1 person found this review helpful

I found this site trying to find information about laryngomalacia as I had heard about and suspected my daughter had it. Prior to her diagnosis, the site was helpful is helping me understand the diagnosis process and what types of questions to ask the doctors. After her diagnosis, it has been a source of support and information. We are very appreciative of the service of this organization, as well as the effort they are making in helping to bring awareness to larnygolamacia!

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Rating: 5 stars  

1 person found this review helpful

Wow what a fantastic organisation! I felt so lost with my sons diagnoses and had no one that understood what my partner and I were going through with our son. The night I found the Facebook page I was in tears. I felt like he world had been lifted off my shoulders and to know that there were other parents like me made me feel such relief.
My son is getting surgery this month and we just recieved his care package. The thought of my son going into surgery is dreadful but the little surgical gown, lu the lamb and the beautiful blanket makes the thought so much more positive! Nate loves his lu the lamb and runs around the house saying lu lu. We will be donating to this beautiful organisation so that many more family's like ours can receive a little ray of sunshine at such a dark time in there lives.
Thanks you so much coping with LM
Leah boorn & Michael and Nate Blakey

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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

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  

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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