Inside Graeme Souness’ awe-inspiring challenge to swim the English Channel: 70-year-old football legend is bringing glimmer of hope to 14-year-old Isla Grist as he raises funds to fight rare and brutal disease

• Graeme Souness is moved to tears when talking about young Isla Grist
• Her brave fight against horrendous disease inspired him to help raise funds
• Souness is training to swim the English Channel in epic challenge for 70-year-old

It’s late afternoon on the Black Isle; the Highland skies, still blooming in the sunshine, tower overhead. Isla Grist, fresh from a round of Press interviews, is finally getting the chance to rest.

First it was an appearance on BBC Breakfast, then a round of interviews in London, with a new one recently completed on This Morning. Thankfully, it was a virtual affair – filmed via the comfort of her own home. Now, she can relax and take the time to assess it all on repeat.

This is an exhausting business for the 14-year-old but, as the teenager is all too aware, a necessity, too, in order to keep the momentum going. Over the last few weeks, Isla has become something of an internet sensation. Filmed on the sofa on BBC Breakfast, her piece with Graeme Souness has gone viral. Watch it, and you’ll know why. 

The archetypal hard man of Scottish football is shown at his most vulnerable; breaking down with emotion when discussing Isla and Epidermolysis bullosa (EB) – the devastating skin condition which has afflicted her since birth.

Over the last month, Souness has been raising awareness of the issue. Alongside four former Marines and Isla’s dad, Andy, the Mail Sport columnist now plans to swim the Channel this weekend in an attempt to raise £1.1million. For a man who has recently turned 70, it is an awe-inspiring task. Not that you’d know it; Souness not only looks remarkably fit for his age, he’s raring to get on with it. I ask him if it’s the biggest challenge he will ever have faced.

Isla Grist (right) lives with Epidermolysis Bullosa, a life-threatening condition also known as butterfly skin and Graeme Souness (left) has been moved by her bravery

‘I had two to three months where I was thinking just maybe I’d bitten off more than I could chew,’ he says, ‘but then around month three or something, I started to get it. I now want to do it ASAP. I don’t see this as a challenge, this is our mission.

‘I was asked before, you know, about big football matches. They were the glory days. This is not about that. This is about getting the job done.’

As vice president of DEBRA, the charity which supports people living with EB, Souness has become inextricably linked to the cause.

There are many different types of EB, which causes the skin to tear or blister at the slightest touch, but Isla has one of the worst. In her young life, she has already had 65 operations. She is in constant pain and is permanently bandaged to protect her skin. There are blisters on the outside and inside her body and now she struggles to even walk. Souness tells me that, from the very beginning, she had his undying attention. He was, in his own words, ‘hook, line and sinker, in’.

‘I didn’t know anything about EB,’ he says, ‘but when it was put in front of me, it was a wild moment, it was like someone had sort of punched me in the face. As a football manager, you work with your doctor every single day and I worked for 20 years as a football manager, but no-one had ever mentioned this disease. Then, when I saw it, I just wanted to get involved. It’s your worst nightmare, you see. It’s the worst possible thing. 

‘I’m struggling to come up with something that would be worse than this, that you have to actually live with. I must have had, today alone, five men say to me they were crying that Monday morning when our interview was broadcast on the BBC. Men! That’s what it does to you. That’s what it does to me when I get emotional. I only have to to look at her when I’m in her company and she does me in, so I struggle with it. 

‘I’m so happy to hear, however, that grown men with no obvious attachment, looked at Isla and were brought to tears. And that’s what we have to have – that moment where people go, wow, I didn’t even know this thing existed. I’m gonna get involved. And that’s what’s happened. And it’s been better than we could ever have expected – it’s phenomenal.’

Certainly, the reaction has been intense. People have donated in their thousands. Within 24 hours, Souness and his fellow swimmers had already hit the £290,000 mark.

The Scotland, Liverpool and Rangers legend puts it down to the horror of the illness and the reaction to Isla herself.

‘I don’t think you can help but be impressed when you’re in her company,’ he admits.

‘She is just a very special character. It comes out right away that she’s a smart kid. You know, she’s bright as a button but she shows more concern for her loved ones than she does for her own welfare. That’s all about Andy, her mum Rachel and her sister Emily and how they’re dealing with her situation. She is the epitome of such stoicism. And I would say the most impressive young person I’ve ever come across in my life. 

Souness is in incredible shape at 70 and relishing the challenge he has in front of him

‘Every time I’m in her company, she makes me so emotional. I only have to look at her. She just has to look at me in a certain way. When I get like that, she says: “You’re a silly old b****r”. But that’s what she does to me.’

It’s clear there’s a protective bond here that comes from a place of concern; he sees her plight through the lens of a father. Indeed, It’s impossible not to feel moved when looking at her in this manner. Souness knows what she has had to endure since she came into this world, but he’s aware, too, how difficult it is for the family around her.

Isla’s mum wasn’t instantly aware of the hardships that lay ahead when she was born. Her piercing screams, however, told their own tale. As did the lack of skin across some of her body.

‘Her hands were red raw where the skin had come off,’ Rachel tells Mail Sport, ‘and her feet were like that, too. Luckily for us, when Isla got admitted to hospital, somebody had spotted or recognised EB. And, although it’s very rare, they had had a case there. We’d had trauma with a previous pregnancy and that was extremely tough, but this was totally unexpected and one which we had to learn quickly to cope with. 

‘For two weeks, we carried Isla around on a padded pillow because we didn’t know if we could hold her. You’re asking yourself if your child is going to die instantly, has she got really bad EB or is it Simplex, the milder form? We kind of knew it wouldn’t be that, because it was too severe at that stage to be as straightforward. There was me, thinking I could breastfeed and things like that and clearly that wasn’t going to work, because she was blistering at her lips when she tried to suckle. It was really difficult.’

It was, the Grists admit, a massive learning curve. From the outset, Isla was medicated for the application and removal of the bandages she would be forced to live with for the rest of her life. That process continues today – and it doesn’t get any easier. It can regularly be a five-hour routine. Immense care is taken so as not to rip any skin. Blisters that have formed underneath her bandages have to be lanced before she is immersed in cream and dipped into her bath. Medication throughout is essential.

Souness has been training in Dorset in frigid conditions and occasionally choppy seas

The family and Isla’s carers try hard to make life as normal as possible – but there is no denying the strain.

Travel, too, is difficult to navigate. The Grists make the arduous trip from Inverness to London on a regular basis, when in need of specialist medical care. The journey in itself can often take its toll.

‘I think we were going to London every two months for a throat stretch,’, says Rachel. ‘She was getting to the stage where she couldn’t swallow food and she chokes and that’s no fun. It was probably another reason she pulled back from school. She had her first throat stretch when she was two and a half years old, then her hand surgery when she was about eight or nine. We had three lots of plastic surgery done; twice on her right hand and once on her left hand. Unfortunately, the effects have regressed, and her hands have just contracted back into little mittens again. She copes remarkably well, but it’s a lot of travel – imagine that after 65 general anaesthetics and 65 sets of coming round, then having to travel straight back up the road again.’

These daily hardships have strengthened the resolve of dad Andy to take part in this swim across the Channel. Not a natural swimmer, he has put in hours of preparation to play his part in the challenge ahead.

‘I’m probably the weakest link in terms of mindset within the group,’ he says with a smile.

‘However, we’ve got a brilliant WhatsApp group, full of banter, which helps to keep us going. Graeme rips into me for constantly losing and forgetting things and one of the other guys takes Graeme apart for being soft – and having fake teeth. It’s that kind of camaraderie. The others are totally unimpressed that he’s an ex-footballer. It doesn’t seem to hold any sway! Then, bizarrely, he comes here to Inverness and Isla hasn’t got a clue either. She couldn’t care less if he’s a famous footballer, known by millions. He’s just Graeme and he’s so kind and interested in her. He takes the time to call on Christmas and at random times, you know?

‘It probably takes a certain kind of person to run towards this fight, and then stay in the fight. Because it’s not very pleasant. And Graeme runs towards the fight, and he has stayed in the fight for four or five years now. He said the other day, he’s in the fight for as long as Isla wants him to be. And he’s got that vulnerability. The confidence to show his own vulnerability – he’s a true alpha male – and yet, he’s got the courage just to say: “I’ll go really close to this fight as desperately upsetting as it is – I don’t mind how that changes people’s opinion of me, because I want to help and I want to get the word out”. That’s just class. He is a legend for me, and for Isla. Not in footballing terms – he’s just a legend in terms of his humanity and his ability to make things happen.’

Andy Grist (left), Isla’s dad, is completing the challenge alongside Souness and four ex-marines

For Souness, getting things achieved is the ultimate goal here. The money, he says, will go towards repurposing drugs so that other young people, like Isla, can have their suffering relieved.

‘Hopefully this will raise enough money to enable the scientists to target 20 drugs that are already on the market and repurpose them to use them in a different way,’ he says. ‘Waiting 20 years for new drugs is too long. I won’t be around long enough to witness when we have a cure for EB. But I hope I’m around long enough to see that we’ve created a drug or scientists have created a drug that enables people to have a life without pain.’

It’s a legacy that might not benefit Isla in her lifetime, but it would, hopefully, help those who follow in her wake. There’s a knowing silence in the air as I ask Andy what Souness means to his daughter.

‘Everything,’ he whispers quietly. ‘She wrote a little note for him. We got some dry robes made up for us for the swim, and she put a little note printed on the inside of his pocket. A special little private note to him. He’s irreplaceable to her. He’s like another dad.’

Rachel agrees: ‘He’s just somebody that’s really genuinely interested in Isla and about supporting her in terms of her mental and physical wellbeing.

‘It means so much to Isla to have somebody that actually, you know, cares for her and has become a big part of her life. Isla totally plays it down and she doesn’t want to post on social media that he’s “been to my house” and stuff like that. It’s almost like a little walk in the park for her. If she could walk properly, you know, he’d be beside her. He is beside her, physically and emotionally, and I think it’s just great what he’s brought to her.’

Rachel grins as she looks over the horizon in front of her. ‘He sort of brings this glimmer of hope. And this great big smile.’

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