Friday, September 6, 2013
Cornelia de Lange Syndrome
I have finally come to terms with Ellie having a clinical diagnosis of CdLS. I know, I know, took me long enough. I just... hate to think of my child having even more problems. And this one is permanent. At least with PRS she could have outgrown it. At least she has a very mild case and is likely to lead a mostly normal life. I joined the CdLS National Foundation. I received a phone call from a lovely and friendly lady who answered all my questions and asked some about Ellie. She's sending us literature. We've already met some CdLS families here in GA. I told her teacher and asked if it makes any difference at school and it really doesn't. I found it interesting that CdLS can cause a cleft palate.