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.
I am a respiratory therapist with two daughters diagnosed with LM. I am so thankful for the site!
For 3 yrs, I worked very closely with LM patients daily and followed CWL on Facebook. I would see questions posted by LM parents and sit in the shadows stalking the responses for accuracy and helpful information. I began making it a routine to passout CWL postcards to all newly diagnosed LM patients in an effort to increase exposure of this disorder and hopefully educate the new parents of what to expect. I was never disappointed. Every single parent who has gone to this website to better understand the disorder has been educated and now feel comfortable moving forward with treatment on their little ones. Yes, some cases are much more severe than others, however, it still prepares you for the worst. This website is amazing and should continue to be recognized for helping others.