If anyone wants to help kids with rare conditions and doesn't know how to go about it (I didn't until I had the shop as a base) here's a few @twitter that you can help, every £1 counts.
@vanessariddle
@SuperJCharity
@alexiscarmall

2 kids have passed away since I started giving less than a year ago, but these 3 are still going strong, especially Vanessa who could probably outrun me in a race now any day of the week. Check out their pages and I'm sure you'll find more kids in the same situation. Just thought I'd let you all know just incase you weren't aware.