I do not know anyone personly, but if you check the message board at
www.pierrerobin.org there was a couple posts from parents of children with
the same syndrome. Not sure if you tried that or not, but they would
probably love to talk to another parent.

>From: "andie" <andreajeffreys@...>
>Reply-To: sticklersyndrome@yahoogroups.com
>To: sticklersyndrome@yahoogroups.com
>Subject: [Stickler Syndrome ] just wanna say HI
>Date: Thu, 02 Jun 2005 23:02:41 -0000
>
>well hi all my 6 year old daughter has "pierre robin syndrome" and also
>has "femoral hypoplasia - unusual facies syndrome" also known
>as "femoral facial syndrome" and was wondering whether any one in this
>group has it too or knows anyone with it.
> It's a rare syndrome so we can't find many people with it (only 6
>people in america ) but none in the UK please help if you can
>
>