Question
I work for a gentleman who has Cornelia De Lange Syndrome.  Lately he has been having odd medical issues.  I have been told by his family that he is the oldest living person in the USA with this syndrome. I have also been informed that we won't be able to find information on what is going to happen to him as he ages because no one would have this type of information due to the average life span of a person with this syndrome being 6 years.  The gentleman I support is 59 years old as of March.  Is there a website, an expert, another known case like his, a foundation, a reseracher, anything or anyone that I could contact to help support him, his family and the staff at my agency through the confusing time he is facing right now?

Answer
I work with two kids who have Cornelia De Lange Syndrome, and the oldest case that I've ever heard of was 45 years. 59 is amazing (I'm guessing he must be the oldest living person with the syndrome).

Unfortunately I don't know of any web sites. However, I've forwarded your question to several people who I consider to be experts on Cornelia De Lange. I'll send you their responses when they come in.

Jon