Re: My Problem...
I would suggest two things. First, try posting on this site's Rare Disorders Board. I wouldn't be surprised if you get a lot of "hits" there.
Also you might want to do a websearch for an organization called the Pierre Robin Network.
Don't be scared. You are most definitely not alone. It's just a question of reaching out, like you are here, and making contact with others who share the same problem. You'll find a lot of comfort when that happens...and it will...