Graeme Souness, 71, to swim English Channel - despite battling heart disease

Aged 71 and just months after emergency heart surgery, the former Liverpool and Newcastle manager’s idea of rehabilitation is swimming to France and back as part of a gruelling 60 mile relay.

His inspiration is 16-year-old Isla Grist, an Inverness teenager who won his admiration at a lunch in London six years ago, with her tremendous courage, despite living with the horribly debilitating condition Epidermolysis Bullosa (EB) - known as ‘butterfly skin’ because it makes skin so fragile.

Swimming the Channel one way before for DEBRA, the charity for EB - which causes skin to tear, break and blister and has 5,000 sufferers in the UK - he raised £1.5million. Aiming to raise £5million this time, Graeme tells The : "These children have no quality of life. And the impact on the families. I certainly couldn’t begin to imagine it. As a parent, you want to protect them, you want to look after them. We’re in a war here, and this is just the beginning. As long as they (DEBRA) want me to keep involved I will be involved to make sure this thing exists until ultimately a cure is found I am in this until the end as this disease is so cruel."

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Embarking on this fundraiser having had two stents fitted inside existing ones in one of his coronary arteries, after experiencing chest pains towards the end of last year, Graeme admits his cardiologist Suneel Talwar is less enthusiastic. He says: "My cardiologist is not terribly thrilled, but I do feel fitter than I did it last time. My cardiologist has looked after me for 15 years and I'm in great hands. What I have to stay away from is things like playing squash or tennis where you are asking your body for a sudden rush of energy. All my training now is getting myself to a level and I stay there."

Graeme, who previously had a triple heart bypass and has suffered with heart problems since retiring from football in 1991 - fell ill at home in Poole, Dorset, last September. The football pundit, who was diagnosed with coronary heart disease at just 38, experienced chest pains after watching England defeat Finland in their UEFA Nations League match on TV. He says: "I was rushed to hospital and I had two stents put in. I remember I got up to make a cup of tea and felt chest pains.

“Three days later, I had a couple of stents put into one of my coronary arteries. Now, I feel great. What I have is a hereditary thing. I am Celtic, we don't have great coronary artery health because our diets and ancestors’ diets have not been great. But I have a condition that can be managed. It was spotted early on, maybe too early on. This has allowed me to live a perfectly normal life. There is nothing I have missed out on. Absolutely nothing. In my case it is just about managing it and staying fit.

"I had two stents put in 15 years ago. So what they did six months ago was put stents back in where I already had them. There was a particular area in one of my arteries which closed down yet again. So they put two stents in as it started to go again there. They went inside the existing stents, blew up a balloon and fitted the new stents inside the old ones.”

And Graeme is not going to let a bit of heart surgery hold him back! He says of the Channel swim: "We hope to grab the public’s attention with this Channel swim as people constantly tell me they have never heard of EB, but the condition can be so cruel. I have seen how people live with it and it is tough. “I first swam the Channel for DEBRA back in June 2023 and we raised £1.5m. At the time the support we had from the public was fantastic and we swam the Channel in just over 12 hours. But this time we are swimming back to the UK as soon as we reach Cap Gris-Nez near Calais - and I am under pressure to perform."

While Graeme is keen to prove himself, he is not reckless about his health. "Throughout my career I have listened to my body and I feel capable of doing this swim. I have a wife and kids and if I did not feel well on the day I would say I would not do it...but that is not going to happen. There will be six of us doing the swim and some of them are Royal Marines, so it is just a bit of fun to them.”

Talking about the swim - which will involve an hour of swimming, then five hours off, then repeat - Graeme reveals the toughest part for him will be swimming in the dark. He says:. “When I swam the Channel in 2023 I got into the water at 12.30am and I was not prepared for that as it was pitch black. It’s all about getting into a rhythm and, because you’re in the darkness all the time and checking where the boat is, it is really tough. I struggled for the first hour."

While his fellow swimmers were concerned about pollution, he adds: “Also there are the jellyfish. “You do have to look out for them as they look like plastic bags out in the sea. “ But the hardships of the epic swim don’t compare to the difficulties faced by people like Isla, who have EB, according to Graeme. “It was a wake up call for me finding out what EB sufferers have to go through,” he says “Everything Isla has to do on a daily basis to cope with the condition is a grind. She has to take drugs to keep the pain away. Every waking moment for these kids is agony."

Isla, whose landscape gardener dad Andy is joining the charity swim, says of EB: "I live with it every day and it is hard to explain what it is like. It's indescribable. Even wanting a shower or a bath can take five hours. It is because the condition makes my skin very fragile. I have nothing that stops the skin from sliding and that causes open wounds and blisters."

The aim for Graeme’s fundraising for DEBRA's appeal, A Life Free of Pain - backed by a string of celebrity friends including boxer , Spider-Man star Tom Holland and Olympian Rebecca Adlington - is to find a cure for EB. He says: "What we are trying to do is to fund the re-purposing of existing drugs that are already out there to try and find a cure for EB. The problem is that if we were to find a drug today it would take between 10 and 20 years before you got it to the market with all the tests it would need.

"Our scientists have highlighted how there are already 20 drugs on the market for different skin conditions but it would take £10 million to see how we could re-purpose them and use them for patients like Isla. We have 5,000 sufferers and we are doing our best to raise funds and raise awareness. But it is no good us talking about 10 to 15 years away for kids like Isla. We need something imminently. We need it next month or next year so we can make their life more acceptable as this disease is so cruel."

But he laughs, when his thoughts turn to Isla. He says: "The worst bit about doing the swim will be landing back in Dover once we have completed it and seeing Isla looking at her watch. She has a great sense of humour and she will probably ask us all "What kept you so long?"

* To support Graeme Souness and his English Channel swim visit

What is Epidermolysis Bullosa?

THE skin condition EB (Epidermolysis Bullosa) is a general term used to describe a group of rare, inherited disorders that cause the skin to become very fragile. Any trauma or friction causes patients' skin to blister. It affects around one in every 50,000 people worldwide. Around 40 per cent of sufferers do not survive the first year and most do not live beyond five years old. Most cases are obvious from birth. EB occurs due to faulty genes, which can be inherited or occur spontaneously. There is no cure. Treatment focuses on relieving pain and treating complications, such as infections or skin cancer.

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