Shanon
Hi again. My 14 year old son was recently diagnosed and when I posted before, I was such a novice. The support list has meant the world to my son and myself. We met a man who has it who has become a mentor to my son. There are people all over the country and the world that have it who have been there and done that. If you e-mail me, I'll send you an invitation for the group. God Bless Y'all and never give up. It is rare, but there are people out there with answers.