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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

162 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.

Donor

Rating: 5

I need more resources can someone please assist. Does anyone have any good resources or point in the direction of an individual or website or even agency that can explain more on children with laryngomalacia and reactions from colds??? My baby boy B was diagnosed with moderate Laryngomalacia around 6 weeks. I was extremely worried. However now that he is almost 2 years old he is doing much better. The only thing is: if he catches a common cold, the retractions, and sucking in between the breast bone becomes intensily present. I believe he will be asthmatic like my other children and myself. When my son gets a vold he wheeze and retracts rapidly and I give him a treatment and it clears things up and he is content. Even though this is only his 2nd ER visit. I would like something better to manage his breathing for these incidents. Im glad to have found this group. Hopefully I will gain a wealth of information.

1

Client Served

Rating: 5

This is a great organization. We have been provided lots of helpful information. We received a care package for our daughter Esmae before her surgery. We loved everything in the care package. Thank you so much for making such a wonderful organization.

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

Client Served

Rating: 5

When getting a diagnosis for your child is confusing and overwhelming... there is a group that is there to help and support you as a parent through out your journey. ❤

1

Client Served

Rating: 5

When our son was diagnosed with laryngomalacia this past March, Coping with Laryngomalacia, Inc. was an amazing support! We have felt such a sense of community and learned so much, all because of CWL. As we continue our LM journey, I know CWL will be right at our side, helping us, educating us, and supporting us.

1

Client Served

Rating: 5

Stephanie Hueston and all of the wonderful people that make up this organization have given my family hope in a time of apprehension and worry. The personal support along with extensive references and resources have helped me learn how to be a better parent to my LM warrior. I am so grateful for this organization and everything that it stands for. Thank you CWL!!

1

Client Served

Rating: 5

My sweet boy was diagnosed with laryngomalacia at 2 weeks old. This group has been extremely helpful, in ways I can't even describe!

1

Client Served

Rating: 5

CWL has not only empowered me with knowledge as a mother and advocate for my child, it's also given me an invaluable community of support. It's a very unique organization, and I'm eternally grateful for the hard work that Stephanie does.

1

Client Served

Rating: 5

Coping with LM has allowed us to feel normal again. It is great to know that we are not alone at any time of day or night, and we are supported on the Journey we never thought we would be taking. Our daughter Keiley has received both a Chibebe Snuggle Pod and a care package through Coping with LM's great support programs. Keiley lived in her Snuggle pod which assisted her breathing until she started crawling, now she uses it as a bean bag to "Chill". The care package was a great comfort while Keiley was in hospital on a respirator after surgery. Knowing that she had her own blanket and gown, rather than relying on the hospital ones which can be so scratchy from years of use! I can not compliment the work of Stephanie and her family enough for what she does for our Babies, this is in no way enough!

Client Served

Rating: 5

When my daughter was diagnosed with moderate LM I was so scared. Coping With LM helped me realize I am not alone and educated me on what bumps in the road we may encounter and how to be prepared. I don't know what I would do with out this organization!!