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.
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. ❤️
Coping With Laryngomalacia gave me more support and education about my son's condition than I could have ever asked! The community of parents I have met that are going through the same thing has been amazing. Thanks to CWL, I knew exactly what questions to ask my son's ent and I felt comfortable because I was already familiar with his condition. Thank you so much, CWL!
This organization has helped our family so much. The information we received helped us advocate for the best for our LM baby, and the support kept us strong through it all.
Coping With Laryngomalacia is a great nonprofit organization that provides tremendous support and resources for families coping with LM, TM and BM!
Our little man has come so very far!! Being part of such an amazing group who understands exactly what you are going through is so helpful and reassuring. Reading other people's stories and seeing what they have/are going through, really makes you red not alone. I know there are days I just feel like I'm by myself, and no one gets it. Then, I remember this group and know I'm not alone at all!
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.
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