Brave Riley Merrill, five, lives with Epidermolysis Bullosa (EB), which causes his whole body to blister and skin to fall off at the slightest touch and friction.
Young people suffering from the condition are often called ‘butterfly children’, because their skin is said to be as fragile as a butterfly’s wings.
Now the courageous tot’s family are holding a fun day to raise money for DEBRA, a charity which helps and supports people living with the condition.
Riley’s mum Jackie, 24, of Mixenden, said: “The condition affects everything, his hands are webbed together and we are just waiting for surgery for them to be split.
“It takes up to three hours to bath and change his bandages and he has to be medicated during this time to ease the process. He has to be fed through a tube as it causes rips and tears in his throat.
“But he’s really good with it, no matter what he does, he always gets on with it.
“I knew there was a chance he was going to be born with it as I have EB, but his is ten times worse. When he was born his leg was red raw and bleeding. Even though I knew about it, it was still a big shock.
“DEBRA have been really great, when Riley has to go hospital in Birmingham, they help with accomodation and whenever I ring, they always help.
“My sister-in-law said why don’t we do something to raise money for them and we thought of the fun day. We’re also hoping to raise awareness of the condition.”
The fun day will be held at Threeways Centre at Nursery Lane, Ovenden, Halifax, on August 29.
The day will include raffles, cakes, a bouncy castle, face paints and more.
To follow Riley’s journey, visit www.facebook.com/rileymerrill