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‘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

Lewis Walker at the end of his 50-mile walking challenge underataken during August. The ten-year-old suffers from a painful condition which means his skin blisters at the slightest touch Picture: Rachael Walker

Lewis Walker at the end of his 50-mile walking challenge underataken during August. The ten-year-old suffers from a painful condition which means his skin blisters at the slightest touch Picture: Rachael Walker

Archant

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.

Parents Rachael and James Walker with their children Chloe and Lewis fundraising for Debra UK. The charity  helps people like Lewis who suffer from a range of genetic skin diseases which cause blisters at the slightest touch Picture:  Rachael WalkerParents Rachael and James Walker with their children Chloe and Lewis fundraising for Debra UK. The charity helps people like Lewis who suffer from a range of genetic skin diseases which cause blisters at the slightest touch Picture: Rachael Walker

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.

Lewis Walker, aged 10, and  his sister Chloe, 14 who have been fundraising for Debra UK. The charity helps people like Lewis who have a rare and painful skin disease due to protein deficiency in the tissue which makes the skin extra fragile Picture:  Rachael WalkerLewis Walker, aged 10, and his sister Chloe, 14 who have been fundraising for Debra UK. The charity helps people like Lewis who have a rare and painful skin disease due to protein deficiency in the tissue which makes the skin extra fragile Picture: Rachael Walker

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.

Lewis Walker raised over £750 for the Debra UK charity which helps people  like him with a rare skin disease.
As well as walking 50 miles he made up goody bags and had car boot stalls Picture:  Rachael WalkerLewis Walker raised over £750 for the Debra UK charity which helps people like him with a rare skin disease. As well as walking 50 miles he made up goody bags and had car boot stalls Picture: Rachael Walker

“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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