Since agreeing to get involved with this I've done some research on the task ahead of us and its certainly not going to be ajolly. So please don't think the four of us will be having it easy far from it.
I'd like to add my bit to Simon commentary in that it wasn't a highly paid consultant the diagnosed Steve's daughters condition it was his wife who linked together all of the conditions.
The Marfan Trust is like many unheard of charities in the UK constantly struggling for money to raise awareness and conduct research. Last year the charity raised £50,000 ( much of this from bequests ) which in today's world doesn't stretch very far, and hence the reason for the disease going undiagnosed, as the medical profession doesn't join the dots. If our efforts can prevent a few parents suffering the uncertainty that Steve suffered then I'll be happy.
I've done a few children's charity things now and the bit that gets me at the end of the day is how lucky I've been to have two healthy kids, and you can't put a price on that.
So please dig deep and spread the word.
