Hi Everyone, My name is Emily and my son Levi is currently in the Children's ICU with what we are pretty sure is SCLS. He isn't officially diagnosed, but displays all the symptoms. We have a conference call with Dr. Druey tomorrow so hopefully we will get more questions answered. I just wanted to introduce myself and hope to learn more about this syndrome.

Welcome to our Community, Emily! I'm glad you found this site and I hope all the information posted, starting with the Disorder Details and Disorder Resources sections, will keep you constructively occupied during all the time you will be sitting -- and worrying -- by your son's bedside. And I'm very pleased that you and/or your doctors have already linked up with Dr. Druey at NIH. He is a great resource.