Over the Easter weekend, I unexpectedly took part in a firewalk.

Who would actively choose to walk over hot coals??? Well, apparently me... but all for a very good cause. The 11-year old nephew of a friend of mine has a rare condition called FOP which turns children into human statues.

What is FOP?

FOP (Fibrodysplasia Ossificans Progressiva) is one of the rarest, most debilitating conditions known to medicine. Muscles, tendons & ligaments turn to bone imprisoning the body in a second skeleton. There’s currently no effective treatment, or a cure, and the average life expectancy is only 40-years-old. Watch our video, narrated by Stephen Fry, for more info: https://www.youtube.com/watch?v=jrlSA9llvsg

Whereas most children can play, get hurt, and get back up again. For a child with FOP, normal play is extremely dangerous as any injury can cause that part of the body to grow additional bone. Normal muscles and ligaments gradually turn to bone, limiting movement. The use of an arm, leg or neck could be taken from them overnight. 

Research 

There is amazing research being done at the moment to find treatments or a cure for this life-limiting disease, but they aren’t there yet, so any support you can give is enormously appreciated! Thank you 😘 

Find out more here: www.fopfriends.com