Graeme Souness ‘ready’ for challenge of a lifetime as Scottish football icon prepares to swim English Channel for charity

Widely remembered as a tough-tackling, no nonsense midfielder who left everything out on the football pitch, Graeme Souness has now declared “he’s ready” to take on the challenge of a lifetime later this month.

The former Rangers, Liverpool and Scotland player has committed to swimming the English Channel to help people living with a rare and extremely painful skin condition after meeting 14-year-old Isla Grist in the Scottish Highlands.

She has battled Epidermolysis Bullosa, also known as “butterfly skin”, since birth which causes the skin to tear or blister at the slightest touch. She has to be wrapped head to toe in bandages which are changed three times a week.

Inspired by Isla’s story and courageous attitude, Souness agreed to take on the 16-hour challenge in aid of skin charity DEBRA’s A Life Free of Pain campaign. The teenager’s father Andy will join the footballing legend and four other team members as they swim 21 miles across the channel to France together, facing the pain and fear of the duanting task to help raise awareness of the daily pain faced by thousands of sufferers battling EB.

The 70-year-old fought back tears during an interview on BBC Breakfast last month when discussing Isla’s condition and how he first became aware of the “cruelest of diseases” when meeting a fellow sufferer at a dinner in London five years ago.

Now after nine months of preparation and training, an emotional Souness has opened up on his decision to raise money for such an amazing cause. Speaking exclusively to GlasgowWorld, he said: “We’ve had the most incredible response since the interview on BBC.

“I’m absolutely delighted because we want as many people as possible to take an interest in what we’re doing and I just plead with anyone who can do a bit for us to help these poor kids. Our job is to make people aware that this horrible, cruel disease exits. I’d never heard of this disease before and when I found out a bit more about it five years ago, it was like someone punching me on the nose.

“I went home that night, couldn’t sleep and the following morning I made contact with DEBRA Scotland and it’s just grabbed me ever since. This has is one of the most horrific things I’ve ever seen in that it effects young children. If you’re desperately unlucky enough to have this disease, you have almost no quality of life. People are left in excruciating pain and kids have to take ridiculously strong drugs lik Diamorphine, Fentanyl and Ketamine just to take some of that pain away.

“Football is much criticised for not being seen to do more for the community. Some footballers do their bit, I’m not saying all of them, but the majority of them do. I’ve been in football for a very long time and I’ve come across some very, very sad cases. Hopefully I can make some sort of impact on people who don’t know much about how this disease like it’s had on me.”

Spending time in Isla’s company at her family home in the Black Isla, near Inverness has left a lasting impression Souness. “Whenever I spend time with here she makes me cry an that’s a new experience to me,” he admitted. “We all cry at different things but it’s genuinely a privilege to know her. She’s a bright, young girl, smart as a button and she wants to live her life as best as she can with this incurable disease.

“It’s humbling. She often worries about her dad Andy, his wife and Andy’s other daughter. She’s concerned for them and when you see what she’s going through, she’s just an amazing little individual and it’s humbling to be in her company.”

An avid swimmer, former Sky Sports pundit Souness will set out on his mission to raise £1.1million for the DEBRA charity, which supports more than 5,000 people in the UK who currently live with the genetic condition on Sunday, June 18. It is hopes the appeal will help pay to clinically test drug treatments that could improve the quality of life for people with butterfly skin.

“I started swimming with some of my pals down on the south coast when this idea was floated,” Souness explained. “I found it very difficult initially. We started training for this in September last year and for the first couple of months I was getting back home after the swim and thinking ‘maybe I’ve just bitten off more than I can chew here’.

“After about three months, the penny dropped. It’s about technique, getting your breathing right and now I just love swimming. I wish we were doing this challenge tomorrow. I’m ready, we’re both ready. It’s been more difficult for Andy than it has been for me because he’s been swimming up in Inverness where the water is colder and he’s had to do all of it on his own whereas I’ve been part of a group of guys.

“I know there’s a great deal to talk about cold water swimming for several years now, but this is something I’m going to continue doing for long after the challenge. It’s such a great feeling you get afterwards. As long as the sea isn’t too choppy on the day, we’ll be fine.

“I’d like to thank everyone who’s donated so far. The money will be spent very well. All we’re doing is tring to find a way to make their life more bearable and help bring relief because I know I won’t be around to see a cure for this. We have a repurposing programme in place where we’ve got around 10 drugs that are already on the market, which have gone through the process for different skin conditions like eczema. We’re hoping to re-use them in a slightly different way to help sufferers of EB. To take one of those drugs and do that, we’re talking about £500,000.

“But we have to find a way to improve their lives. The best way I can describe this condition, and this is not an overstatement or exaggeration, it’s like someone is taking a blow torch to your skin. It’s blistering and affects both the external parts and internal linings. Can you imagine living with that every single day? It’s just so cruel and for anyone reading this, please take a minute and research the work our charity, DEBRA does.”

Isla’s father Andy is relishing the challenge and reckons the fundraising could be used to find different ways of using existing drugs which might offer a quicker route for providing more relief to sufferers.

He stated: “Firstly, I want to thank the great people at DEBRA who do lots of brilliant work and are committed to finding solutions to the chronic pain these children and adults must deal with to try and alleviate some of their suffering. Once we found out that Isla had EB, the charity got involved straight away as a guide for us. While they can’t give us all the answers we crave, they can still offer us support us and be there with us on the journey.

“I think Graeme hated it (cold water swimming) at the beginning but once I got into a situation where I felt comfortably doing it, now my mindset has totally changed. I first met Graeme in London when I was doing a talk for DEBRA with the Duchess of Edinburgh. We got chatting and arranged for him to come up for one of our events in Inverness, where he first met Isla.

“They became really good friends. For Isla, there’s nothing about football, football management, punditry, she just loves Graeme for Graeme and he takes a real interest in her and she loves him dearly. When he suggested the English Channel swim idea I agreed to take part and thought to myself ‘yeah, sure, I’ll train up for this?’. Then I actually got in the sea, tried to do it and got straight back out again and said this isn’t for me. I ran up the beach, ran away from the shore and wouldn’t look at the sea again.

“Gradually with time and encouragement of the team and them coaching me, I became comfortable with it and now look forward to it. It really helps with the helplessness you feel as a parent or everyone involved from carers, ambassadors. People have the courage to come and step into that fight. You can’t run away from it, you have to fight and who better to fight than Graeme.”