Football hero Graeme Souness has smashed the £1million barrier ahead of his attempt to swim the Channel this weekend for his “butterfly girl”.
The ex-Scotland star, who turned 70 last month, is due to tackle the 21-mile stretch of water tomorrow with a group of ex-marines to raise money for 14-year-old schoolgirl Isla Grist. The Rangers and Liverpool legend is raising the money for research into epidermolysis bullosa (EB) – which he calls “the cruellest of cruel diseases”.
He was inspired to take on the 16-hour challenge after becoming pals with Isla, from the Black Isle near Inverness. Isla’s condition, known as “butterfly skin”, causes the skin to tear or blister at the slightest touch causing extreme pain.
Souness choked back tears as he described Isla as “the most unique person I’ve ever met”. With donations now at £910,000 plus Gift Aid of £128,000 more than £1.2million will go to find a cure for EB.
Speaking to the Daily Record before his swim, Graeme said: “I can’t thank the people who have donated enough. I know how difficult it is. We are in a crisis. Life is tough for everyone. We’ve been getting donations from people who realise how evil this thing is.
“Hopefully millions of people now know what the condition is and can phone up the charity and offer some help. It’s given us a real feeling that we’ve achieved something. It’s really heartwarming.”
Former Sky Sports pundit Souness has been aiming to raise £1.1million for the Debra charity, which supports Isla and about 5000 people in the UK who live with the genetic condition. There is no cure though mild forms may improve with age.
Souness has trained by swimming in the sea near his home on the south coast of England at 5am, three days a week for nine months.
He told the Record: “I’m looking forward to it. I just want to get it done – I’m ready. I’ve never regarded myself as being the weakest link in any of the teams I was part of but I’m happy to admit I’m the weakest link in this team.
“The guys I’m doing the swim with are military guys – ex-marines. These are the real deal when it comes to tough men, not us footballers.
“Football was never challenging. Football is a breeze. It’s all encompassing and it takes over your life when you’re a young player – you dedicate yourself to it and I did that.
“But I never found anything in football a challenge. There was never something where I thought I couldn’t deal with it.
“I’m ready for this. I’ve been training for nine months. It wasn’t easy in the beginning and a couple of times I did question if I’d bitten off more than I could chew.
“The guys I’m with are ex-military. It’s been tough but I’ve enjoyed every minute.
“I think if you ask a football player what he misses most, apart from playing, is being part of a dressing room, a team and the camaraderie, a bit of banter, and I’ve had a laugh with this. It’s been great.
“This is not something I will fail at. It can’t happen and it just wouldn’t happen. If we get in the water and it’s too choppy, I’ll be asking for another date next month or the following weekend. I’ll get this done.”
The group, which includes Isla’s dad Andy, will set off from Dover, heading to Calais in a 16-hour trip. Andy is doing everything he can to raise funds for a cure.
He added: “I know Isla wants what we all want: a life free of pain. A life free of the fear that EB will continue to devastate her increasingly fragile body. She has told me this and it was hard to hear but impossible to ignore and so we must continue to fight EB.
“The fear of cold, dark, potentially rough open water, jellyfish, sewage, the busiest shipping lane in the world, all motivate me. I had been totally unaware of the level of training, commitment and emotional reserves it would take to get me ‘match fit’ for this challenge.
“There have been some difficult moments, I won’t lie, in freezing winter waters. But I now feel I’m where I need to be to meet this challenge.
“I know swimming the English Channel will be a mighty challenge but it is nothing compared to what Isla and people like Isla face every single day.”
EB can lead to lifelong disability and pain and in severe cases can be fatal. Debra, the butterfly skin charity, plans to carry out clinical tests on drugs already available within the NHS to see if they could radically improve quality of life for EB sufferers.
Graeme said: “It is the cruellest of cruel diseases. Isla is super smart. When I talk about her I get emotional. She’s like a little girl with a woman’s head on her shoulders.
“She is way smart beyond her years and the daily challenges she faces is like nothing else I’ve ever seen.
“The condition she has just chews her body, it’s just a crime. That’s why I’m involved, it’s so cruel and it shouldn’t happen to anyone.
“We haven’t got anything to make their lives better. The idea of us raising money is for these very clever scientists to come up with some creams or some drugs that make their lives more comfortable.
“Hopefully, very soon, please God, a cure. There’s drugs out there for eczema, rosacea, and other skin conditions. They’re hoping to blend them, tweak them a little somehow, make them work on the poor kids who have EB.
“They’ve targeted 20 drugs. For every one to make it through the process of doing the tests and making sure they’re safe, is half a million quid.
“Until we find a cure, until we find a way of making life easier for these children, we can never have enough money. We’re going to, hopefully, get the swim out of the way on Sunday, wake up Monday morning and get ourselves up to Westminster.
“We’ve got an opportunity to get in front of some MPs and try to persuade them this is something they should get behind, because government help would make all the difference in the world.”
You can give at donate.giveasyoulive.com/fundraising/debraswim
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