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.
6 months ago I have never heard of Laryngomalacia and was in a world of unknown. This organization has provided tremendous support every step of this journey, whether it be information, questions to ask our doctors, emotional support, and a care package. This organization helped me to help my son. I will forever be grateful.
This is a wonderful organization of people who truly care and try to help. Laryngomalacia is a common problem yet most people have not heard of it until their child gets diagnosed. It can range from very mild (no big deal) to very severe (very big deal). There are all levels of severity discussed in the Coping with Laryngomalacia Private Facebook Group which is wonderfully managed by Stephanie. The group and the organization are very supportive and help parents, grandparents, and anyone affected by this diagnoses to cope and learn strategies as well as spread the word to the world about Laryngomalacia and other associated diagnoses.
So thankful for this organization and all of their information. If it wasn't for this site I never would have pushed for more answers from her doctors! I'm also glad they have connected me with other parents going through the same struggles. It's good to know we are not alone.
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.
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.
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.
I have 2 little ones with Laryngomalacia, one of which also has CHD and the journey has been so rough at times. Most new moms watch their babies breathe just because they are nervous that something may happen; however we watch our babies breathe because we know that the simple task of taking each breath is a struggle for them. CWL has been an amazing support through both of my children's medical journey and I am not sure where I would be without this amazing group.
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
We were diagnosed with laryngomalacia and had surgery scheduled one week later. We found this site. Not only did we find great resources, information, and support; we found d hope. They sent us a care package with a lovely blanket and Lou the lamb. We even got our package prior to our surgery! I can't express my gratitude for this nonprofit organization. We have been beyond blessed.