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.
Very supportive. Offers us LM families endless resources, a place to connect and a community where we don't have to feel different.
Coping with Laryngomalacia has been more than a "group" it is a family. When,my,son was diagnosed with Laryngomalacia, I was scared, i didnt know what this thing was let alone pronounce it! Later that night I took to the internet, the first site that popped up was Coping With Laryngomalacia. I was relieved because I was no longer alone, there was someone out there who understood my fears.
Fast forward 3.5 years, my son is doing great. He had the life changing surgery @ 18 mons. and received his care package which was filled with a beautiful crochet blanket, which is his favorite.
Although my son no longer has many issues, I am still very active on the FB page. I am blessed to have to opportunity to be a World Leader, where I hope to continue to support families on their LM journeys.
There will forever be a special place in my heart for Coping with Laryngomalacia
It is so scary to hear your baby breathing across the room. I thought I was just an over protected mom. Turns out I wasn't and my baby has LM and TM. I would never of made it through the first 2 years without the support of this foundation and listen to other mither's stories. Now my baby is 4 and very healthy after his surgery. I try to give encouragement to other parents whenever I can on th Facebook page !
Coping with LM has been an outstanding resource for my friend Tarah and her son, who was diagnosed shortly after birth. They've been incredibly supportive, even going so far as to ship a care package to her overnight for her son's surgery. They provide amazing education and support for not only the parents of children with LM, but the family and friends who are also confused and curious about this condition. They're wonderful, and five stars isn't enough!
I have never felt such a relief as I did when I found coping with LM. I was a 2nd time mom and my infant was struggling to breathe. Not a doctor in sight would listen to me. I found thi group and figured out how to explain things and exactly what we needed to do. I am grateful beyon words for coping with LM.
Thanks to Coping with LM, I never journeyed alone. Whenever my daughter was newly diagnosed, I found this organization who guided us through a very tough time. They gave me questions I didnt know I needed to ask, advice when I didnt know where to turn, kind words when we hit rough patches, & gifts when the scary word "surgery" was brung up. Without them, my daughter would NOT be getting the proper care she so desperately needed.
Avery with her lu the lamb! So happy I found CWL When my daughter was in the children's hospital for laryngomalacia.
This group was a lifesaver for my family! Other parents helped me problem solve and advocate for my son while offering so much emotional support! Thank you so much Stephanie for all of your hard work!!
Coping with LM has given me the knowledge to know what my son needs in his care. They've provided me with a community of support to help through even the hardest of days. If ever I have even the smallest of questions they are there for me. They give hope when we're scared and lost. Without coping with lm I would be at a loss on what to do for my son. Stephanie is personally there for each and every parent.
We have two children with LM. We had zero resources when our son was diagnosed and he had numerous problems that we didn't exactly know who to talk to about. When our youngest was diagnosed with LM and TM I knew there had to be more information out there and found Coping with LM. The about of information and resources that we have received through CLM has been priceless. From what to expect during surgery to the right questions to ask and even listed of specialists that are well informed. LM can have so many compounding factors and I know we would still be running blind if it wasn't for this amazing organization. The online community is also an endless source of comfort knowing that you are not the only family going through these struggles. We cannot say enough great things about CLM!
Coping with LM and the community that surrounds this great organization has helped me so much in the 6months of my daughters life so far and especially since she was diagnosed with LM at 2months old. Stephanie is always super helpful and supportive and easy to get in contact with. They quickly helped a friend of mine who was going through a rough time with her son and sent him a wonderful care package a.s.a.p. I'm so happy to have heard of and got to know of coping with LM. I will support them in any way I possibly can and forever spread the word of this great organization.
I found this organization and It's Facebook page on a Google search after my 2 month old was diagnosed with Laryngomalacia. I have learned so much from Stephanie and the other wonderful people here. With the information I've learned here and encouragement from others I have become a very educated advocate and voice for my son I didn't realize how much he was truly affected by LM until I heard stories from others that I could relate to. We received a care package in preparation for my sons upcoming surgery and I look forward to contributing to this program in the future as well. This is an organization doing great things for a very life changing but not well known condition.
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.
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. ❤
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.
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!!
My sweet boy was diagnosed with laryngomalacia at 2 weeks old. This group has been extremely helpful, in ways I can't even describe!
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.
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!