‘An inspiration’ - boy, 10, with rare skin disease which causes painful blisters completes 50-mile walk for charity
PUBLISHED: 12:27 03 September 2020 | UPDATED: 12:27 03 September 2020
A ten-year-old boy with a painful disease which causes his skin to blister has been declared an inspiration after completing a 50-mile walking challenge.
Lewis Walker was diagnosed with dystrophic epidermolysis bullosa (DEB) three years ago but was born with the rare genetic condition which means his skin blisters with the slightest touch.
He has to endure regular lancing and draining by his mother Rachael Walker who says he “just gets on with it” and rarely complains even though it can be as painful as third degree burns.
She said that during his birthday month of August he decided to set himself a walking challenge to help the charity that has helped him with tips and advice.
Because of the condition - an apparently spontaneous case with no other sufferers in his family - he was only able to do up to two miles at a time snatching the opportunity wherever he was.
On flare-up days he was unable to do anything at all, but on others could make up for the lost miles.
He completed the challenge on Gorleston’s lower prom amid a wave of applause, bursting through a ribbon in traditional style and trebling his fundraising target of £250 for Debra UK.
Mrs Walker, 33, said the family, of Cherwell Way, Gorleston, including dad James and big sister Chloe were super proud of Lewis.
“Walking is a struggle and I am amazed he did the challenge,” Mrs Walker said.
“Anything that causes friction is a problem like peeling an orange or opening a tin.
“He is an inspiration for us. I just feel we can all learn from him.”
He has also fundraised at car boot sales and made up goodie bags containing charity merchandise and home-made key rings, as well as raising money for a child with cancer.
Lewis has already lost his toenails to the disease and they are hoping to save his fingernails.
Once an oversized liquid blister has formed on his fragile skin it is difficult to get rid of and keeps coming back, his mother said.
A Herman Primary School pupil, he struggles with PE and even to hold a pen and has to wear trainers rather than shoes.
The family won’t know until he reaches his teens whether the condition will stabilise.
There is currently no cure.
To support the charity visit debra.org.uk.
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