Liza,
I just read the NY times article. Wow! I am beside myself for my niece right now. She is so young to have this. This is not going to be good or easy. Now that I realize all she will not be able to have or do. They say when it comes on young like this it is just a mtter of time. and there is not a lot of medicine to help it either. She can't have kids or might not even get married. Who wants to marry someone who is going to go insane basically. I am sad! My poor in-laws!
But thank you for telling me about the article it has made me more aware. I feel I should look into fund raising and what not to see if I can do anything.