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.
Such a wonderful group. We live in a small community where Laryngomalacia is never heard of. They have given us so much information to help us get the care we need. Thank you so much for you wonderful help!
I learned about this site about a month ago it is amazing. My son has laryngomalcia and I felt lost. Until I found the site I realized I was not alone there are lots of mommies out there who are dealing with the same thing. It's also great because you can ask questions and you can also see the progress that these kids are my king I feel blessed after finding it.
I found Coping with Laryngomalacia when my daughter was diagnosed at 6 weeks.... I was lost, confused, scared, and alone because I didn't understand what was going on with my little girl...once I found this group I felt relief...I read other people's stories that sounded very similar to mine...it made me feel like I could talk about my situation and get feed back without feeling like I am constantly repeating myself and people around me getting tired of my story.... We as parents of children with LM know the hardship of the struggle.... We fight hard because fighting hard is all we've got.... Our little ones are considered pintsize powerhouses, well then we as parents are the keeps of the powerhouse who will never stop pushing forward....
Nancy Villanueva, Ogden UT
Imagine having a child who is diagnosed with laryngomalacia and not only are you unfamiliar with this diagnosis, but you also have nowhere to turn for support and information. This organization provides comfort and support to families that are dealing with this, as well as information and the ability to be in touch with others that are in the same situation. Stephanie, the founder of this organization, works tirelessly organizing fund raisers, answering e-mails, sending handmade care packages to families, and providing support to families all over the world. As I see how many people are able to communicate and provide support for each other, I realize how proud I am to be a volunteer for this organization.
My son was born with LM and it turned our world upside down. CWL was there every step of the way with support. We are thankful for all they do for LM babies and LM families. They made an unimaginable event in life a little more bearable. Thank you CWL!
I saw coping with LM on the Internet one day and that's been a few years ago. And been reading up on the Facebook group ever since. . Every time I needed help or advice they were always there for me. When my daughter was still alive they sent me a box with so many little presents in. When I went through each item I started crying. I couldn't believe that people I have never met before could care so much. The cards were filled with heart felt words and support. Hand made knitted blanket and so many other items. I didn't know how to say thank you enough. And when my daughter Mika passed away they sent off a beautiful white dove into the sky for her in remembrance. These people that are part of coping with LM esp Stefanie has been a big part of my life since day one . And what I've decided to do is start a coping with LM in South Africa. To help parents and babies in S.A. as we in S.A don't understand what this condition is all about. Just want to say thank you to the team of coping with LM!!!! You are all amazing angels!!! ♡♡♡♡♡
I only wish I had found this non-profit sooner! For the first year of my son's life, I felt very alone. I did not know anyone who had a child with challenges similar to my own. When I came across CWL one night, I was not sure what to expect, but I was almost immediately relieved that I had found others who were in a similar situation. Stephanie, the founder is wonderful. The little care package we received was such a sweet gesture, and I love that I always have the opportunity to swap stories, get advice and I now know we are not alone on this journey! Thank you CWL!
After finding CWL my husband and I no longer felt alone in the LM fight. My child was dx with LM at 6 weeks and we had no idea what this condition was or how hard it was going to be to deal with it. The wonderful team and members of CWL helped us through and gave us answers to questions that even my daughters Drs couldn’t answer. My daughter rec’d a beautiful blanket and socks when she went through her supraglottoplasty, along with kind words of encouragement. The blanket is something that she carries around daily; it became a part of her support system. The support given to us moved me so much that I decided to become a volunteer with CWL to offer moms and dads any help that I could give. I am so thankful for the assistance and support we have received from CWL.
I have not been personally affected by LM until I met Seraphina. She has been through more in one year of life than I could ever imagine. Her strength, love of life and amazing mother have inspired me to help any way I can and, more importantly, to spread the word of LM! CWL began a movement of bringing a rare defect (I dont care what the professionals say-it IS rare) into light and the support it provides is unmeasurable. CWL and its founder, Stephanie, truly are inspirational. If more people were like Stephanie the world would be a pretty incredible place.