Hi, I have a 7 year old with this syndrome and wondered if anyone has a child of similar age that they would be interested in talking to my daughter?? I feel that not many people have heard of this syndrome and although it is upsetting for us parents, it is just as much if not more for the children as they feel like they are the 'only one' with this. Us adults have the ability to talk online but children dont have that.
We live in Twickenham and i was wondering if anyone would be interested in their child and my daughter maybe writing or meeting??