Graeme Souness fights back tears over girl living with rare skin condition
Graeme Souness speaking to ITV Granada Reports
Former Liverpool and Blackburn Rovers manager Graeme Souness has fought back tears as he described how much children living with a rare skin condition suffer.
The footballing legend is to take part in an 85-mile cycle from Dover to London as part of a relay challenge set up to raise money for DEBRA UK, a charity supporting people with the skin disease Epidermolysis bullosa (EB), also known as butterfly skin.
He has already swum the English Channel to raise money for research into the condition, but says he wants to do more.
Souness' motivation is his good friend, Isla Grist, 16, who lives in the Scottish Highlands and has recessive dystrophic epidermolysis bullosa, an incredibly painful form of EB, which causes the skin to blister and tear at the slightest touch.
Speaking to ITV Granada Reports he said: "This disease is a living nightmare for these children, and I don't think Isla minds me saying this, but her skin looks like someone has taken a blowtorch to it."
Fighting back tears he continued: "It's a life sentence. They're born with it. Every waking moment is filled with pain, and it's groundhog day for them every single day.
"There's no respite from this, this is a war these children are involved in, and it's a war we have to win."
Graeme and Isla first met five years ago after he went to a dinner in London to raise awareness of the disease, which inspired Graeme to get involved with the Debra charity in Scotland, which is where Isla is from.
The pair are now firm friends, with Graeme describing Isla as the "the most impressive person" he has ever met.
Isla told Granada Reports how the condition affects her life on a daily basis.
She told Lucy Meacock: "Every morning, I get up and I have to do all my dressings, check everything is still in place, and make sure nothing is going to get stuck to my clothes, or rub.
"Three times a week I have to change everything, every bandage, and I have over 100 bandages so it takes about five hours."
The condition is extremely painful, with Isla revealing she is on methadone and ketamine to deal with that: "I am on some pretty heavy medications for the bandage changes, and just for every day."
Souness, now 71, who played 359 games for Liverpool in a glittering Anfield career, raised over £1.4m with last year's Channel swim, which helped DEBRA UK commission their first drug repurposing clinical trial.
This wasn’t enough for Graeme though, in his words: "The support we received when we swam the 30-mile stretch of the English Channel blew me away, however, there is still so much more that we need to do to support people living with the excruciating pain of EB, which is why we’re getting the team back together.
"As a team, we’re going to push ourselves even further and swim twice as far, swimming the English Channel there and back, and then cycling the 85 miles from Dover to London.
"It’s going to be tough for sure. I’m not sure whether I can physically do the swim as I still haven’t recovered from my shoulder surgery earlier in the year, but I’ll give it my best shot.
"If I can’t swim, I’ll ride, I’ll do whatever I can, I must because we need everyone to play their part to BE the difference for EB.
"Along the way I’ll be thinking of my good friend Isla and the thousands of other children and adults who are living with the pain of EB right now.
"With your support we can make a difference to their lives today and give real hope for tomorrow. Thank you."
Graeme and the team take on their biggest challenge yet in early September.
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