My younger brother Dylan has FOP one of the rarest, cruelest conditions known to medicine. It affects only 1 in 2 million people which makes it almost unheard of. This in turn makes raising £120,000 a year to keep research at oxford university extremely difficult.

So what is FOP?
One of the rarest, most disabling genetic conditions known to medicine, FOP causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.
FOP traps a healthy mind in a frozen body.
The only indication a baby has FOP is the malformation of the great toes. At present there is not a cure.

Dylan is 10 years younger than me so it’s fair to say I have been fiercely protective of him since he was born in 2002. I watched him grow up enjoying running around the garden, playing with his toys and doing everything else young children enjoy. Although Dylan was diagnosed at 5 years old FOP never properly reared its ugly face till he was ten and with it it took his ability to move one of his arms.
In the past 7 years since then it’s restricted movement in his other arm, his neck, his jaw and most recently his leg leaving his wheelchair bound when he’s out of the house. All of this before his 18th birthday.

Dylan is incredible and his faced this was extreme maturity and dignity.

As I’ve just had a baby I’m in no state to run a marathon or jump out of a plan but I’d love to raise some money towards getting a cure for the condition that’s robbing my brother of more and more of his independence daily. So this September I will be giving up chocolate (WHICH IS MY LIFE!) to hopefully get some sponsorship for FOP Friends.

Thanks for reading X