Graeme Souness takes on new challenge after raising $5.8m to fight ‘terrible disease’

Liverpool icon Graeme Souness is preparing to cycle 85 miles from Dover to London in a relay challenge to raise money for DEBRA UK, the charity that helps people with Epidermolysis bullosa (EB), also known as butterfly skin.

The 71-year-old Anfield hero is not one to shy away from a challenge. Last year he braved the water to swim the English/French Channel for DEBRA UK, raising £4.5 million ($5.8 million). And now, despite a shoulder injury sustained during that swim, he plans to rejoin the team.

They plan to conquer the swim both ways, cycling from London to Dover before diving in. Former Liverpool player and manager Souness, now vice-president of DEBRA UK, was inspired to get involved after meeting Isla Grist, a 16-year-old from Inverness who battles EB. He has since become a pillar of support in her life.

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Souness has been vocal about the impact of EB, calling it “the most horrible disease” last year. He said: “When you’re bloated with it, you have to wake up every morning and say, ‘Why me?’ It’s a desperate situation, and the parents have to deal with it – and that’s what we do.”

“I didn’t know anything about this, I’d never heard of this disease and the vast majority of people don’t know anything about this disease. Please do a little research and see how awful and horrible this is for the patients and the impact it has on families.

“It was quite a blow to my nose when I first saw a sufferer. You have to be a special person when you come across Isla or other poor children who are suffering, not to be affected by it. I beg anyone who can do a little for us, because we have to bring them relief.”

In an emotional segment on BBC Breakfast on Tuesday, he said: “We do it for this young lady, and as I said, when you see what she goes through every day, every hour, whether it’s us putting up with a bit of cold water or us being on a bike for a couple of hours, it’s nothing compared to what she goes through every day.”

He added: “She’s a determined girl.”

A degenerative condition that affects children’s organs and development, EB causes the skin to become fragile and often results in painful blisters. There is currently no cure for the condition.