Hi holly40 - welcome to PC and nice to meet you. The old saying, "you learn something new everyday" is so true because I've never heard of this before...I had to look it up and I love learning new facts. I was a bit confused - I don't know if you're trying to say this syndrome isn't genetic or just the person you're writing about isn't? Maybe you could give us more history. Here's a link for others to learn what this is:

http://www.physorg.com/news197218264.html