The awesome courage of the little girl who has melted the heart of football’s hardest man Graeme Souness… as he trains to swim the Channel to raise money for Isla, 14, whose every moment is agony due to a rare skin disease
- Isla Grist suffers from an illness which causes the skin to tear or blister
- Epidermolysis bullosa is uncurable and affects one in 50,000 children
Graeme Souness is not really the sort of chap you’d expect to have a gentle cry with, over a cappuccino.
He is the master of the tough tackle, one of the most uncompromising players of his era.
But something — or rather someone — has happened to the hard man of football and made him rather fuzzy around his notoriously muscular edges. Because all week, the former Liverpool, Rangers and Scotland star has been tearing up.
On the BBC Breakfast sofa when he appeared on Monday morning with his amazing young friend Isla Grist. During Zoom interviews about her plight. Earlier this morning, standing next to me in the sunny sea at Poole in a wetsuit, he was crying.
Later, on the beach, his eyes glinted dangerously behind his sunglasses. And now he’s at it again, over coffee, setting me off.
Graeme Souness and 14-year-old Isla Grist, who suffers from Epidermolysis bullosa, or ‘butterfly skin’, a brutal and regressive illness which causes the skin to tear or blister at the slightest touch
During Isla’s (pictured with her mother Rachael) short, painful life, she has already had more than 60 operations and is on a cocktail of ketamine, fentanyl, methadone and midazolam to manage the constant, grinding pain
Graeme with Jane Fryer at sandbanks ahead of his swim across the Channel to raise funds
‘I rarely cry! Maybe once a year at a funeral. But there’s something about Isla that has changed me,’ he says.
Isla Grist is 14 years old and suffers from Epidermolysis bullosa, or ‘butterfly skin’, a brutal and regressive illness which causes the skin to tear or blister at the slightest touch.
One in 50,000 children are born with it, some inherit it from parents who are carriers and there is no cure.
During Isla’s short, painful life, she has already had more than 60 operations and is on a cocktail of ketamine, fentanyl, methadone and midazolam to manage the constant, grinding pain.
Isla and Graeme have been firm friends for the past few years and, in June, he will swim the Channel as part of a team of six, including Isla’s dad, to raise money and awareness for the charity Debra’s A Life Free of Pain appeal, which it is hoped will help pay to clinically test drug treatments that could improve life for people with butterfly skin.
His target is £1.1 million — his football shirt was always number 11. But it’s more about raising awareness. Because, as Graeme puts it: ‘You couldn’t make up a crueller illness if you tried.’
Today, blisters cover more than half of Isla’s body which is wrapped in bandages. Even worse, butterfly skin also affects the body internally — in the mouth, the throat.
All of which she handles with staggering style and panache.
‘I rarely cry! Maybe once a year at a funeral. But there’s something about Isla that has changed me,’ Graeme says
Scotland player Graeme Souness on the ball during a British Championships match between Wales and Scotland at Ninian Park on May 19 1979 in Cardiff, Wales
In Monday’s extraordinary BBC interview, as she spoke in her high, clear voice, she seemed far more concerned about helping fellow sufferers than herself.
(Do, please, watch it. Not just to see if you can make it to the end without your heart constricting in awe at Isla’s courage. But also to learn more about this monstrous disease suffered by 5,000 people in the UK, and how we can all help.)
When I speak to her by telephone from her home near Inverness, she is calm, mature and humbling as she explains how she tries to divert her mind — not just from the chronic daily pain and the limitations she faces, but the agony she endures three times a week, when her dressings are changed.
‘I watch funny videos on YouTube and cuddle my dog and talk to my parents and try to think about something happy. Horses, mostly. I like horses,’ she says.
‘I do get a bit sad sometimes, but mostly I try not to think about it too much. There’s no point in thinking about it, it’s just how it’s played out.’
She does like thinking about Graeme, though. And their unlikely, but very close, friendship.
‘I’m not a big fan of football. I don’t support a team. I don’t watch it. So I’d never really heard of him before, but he’s very, very nice,’ she says.
‘He’s a hard man but he’s got a very soft centre! And I’m very proud of my dad and him for doing the swim.’
Graeme Souness in action for Scotland during the FIFA World Cup match between Scotland and Holland in Mendoza, 11th June 1978
Graeme in action for Liverpool during the European Cup final between Liverpool and Club Brugge at Wembley Stadium on May 10, 1978 in London, England
From left to right: Graeme Souness, Kenny Dalglish and Alan Hansen with the Euopean Cup after their 1-0 victory over Real Madrid at Parc de Princes on May 27, 1981 in Paris
Graeme’s relationship with Isla is the one where he’s happy to play second fiddle.
‘She gives me stick and I just take it. She can bully me a bit,’ he says. ‘When I’m talking, she’s looking at me with her head tilted as if she’s thinking: ‘You’re talking a load of nonsense, son.’ It feels like my mum’s listening to me and I feel a little boy again.’
Gosh, it’s hard to think of Souness taking stick from anyone, particularly a teenage girl with zero interest in football.
This is, after all, a man who has never knowingly taken anything on the chin. As a player for Liverpool in the 1980s, he was brilliant.
But also utterly uncompromising with his very hard tackles which left quite a few bruises and the odd broken jaw on the pitch.
So is he just a big old softie, after all?
‘We’ve all got a temper and it’s just a matter of what flicks that switch in us,’ he says. ‘Professional football is a tough business. But people who really know me would say I am a softie,’ he adds firmly.
Then suddenly he breaks off, points to a young girl at the next table mucking about in the sunshine and his voice thickens.
‘Look at that little girl over there. I wish that was Isla. Oh dear. I’m going to cry again…’
While Graeme isn’t mad keen to pick back over his ‘toughest’ moments, he does tell me that his 23-year-old son — who wasn’t born in time to witness the really hard-nut years — likes to tease him about it.
‘He sends me YouTube videos of when I was maybe being a wee bit naughty…’
Ha! And does he take the mickey about the perm, too?
‘Perm? It was not a perm! It’s my hair! I went home once and even my mum said: ‘You’ve had your hair permed, son.’ And I said: ‘No I haven’t!’ So even my mum got it wrong . . .’
Even as a manager — for Rangers, Liverpool, Newcastle, the list goes on — there were endless run-ins and dramas, yelling matches, touchline bans and a bizarre incident in Turkey in which he ran on and planted a flag on the pitch.
‘I don’t think I had the right personality to be a manager,’ he says simply. ‘The players are too powerful now.’
Latterly, as a very popular pundit for Sky TV, he was never afraid to speak his mind.
Today, squaring all those ridiculous overpaid egos and his extraordinary life with brave little Isla and her ever-shrinking world must be increasingly hard.
‘I’ve been very, very lucky,’ he says quietly. ‘I’ve lived the dream that 99.9 per cent of the world’s population want to live and I appreciate that every single day. But the luckiest bit of all has been meeting Isla.’
They met five years ago at a Debra charity dinner and Graeme was poleaxed. ‘It just punched me between the eyes.
I thought: ‘How have I never heard of this? How could I not have known?’ Isla was nine but I felt I was talking to an adult and I’ve been led by her ever since,’ he says.
He vowed then and there to do everything he could to help. ‘It’s more than respect. She’s the most impressive young person I’ve ever come across. She changed me,’ he says.
‘I’m not wanting to sound like an old fart here, but we all take so much for granted. We have so much.’
Sadly, all of us but little Isla. As the disease marches on, so her life is shrinking. Her beloved horse-riding lessons are now in the past.
So is school. She has already lost half her skin, along with the use of her fingers and toes, now encased in a layer of skin almost like a mitten, and everything — sitting, eating, drinking, moving — hurts.
While she is extraordinarily impressive, even she can’t remain forever cheerful as she rides the waves of pain.
‘I get very upset sometimes, yes,’ she says quietly. ‘Usually when that happens, I wait for the next day which might be better. Sometimes, if it all feels a bit too much, I might have a bit of a quiet cry, but mostly I’m okay.’
No wonder Graeme has been so deeply affected.
‘She made me see that I can be more. I can do more,’ he says simply.
In many ways, the swim, the fundraising, all of it, has come at a good time for Graeme who stepped down from Sky last month.
‘I can’t sit about and watch television. I am good at being busy.’
So he swims, plays golf off ten, is in discussions with Glasgow Rangers about an ambassadorial role and is open to more TV punditry.
But right now, it’s all about Isla and Debra — he is vice president of the charity and determined to do all he can to help.
While he loves football, he isn’t steeped in it in the way some former players are.
‘If you came into my house, you’d have no idea. No medals, no cups. Nothing. And I never play.’
But if he was walking down the beach and a football came his way?
‘Ah. Well, yes, if it came towards me, I’d smash it back to them! he gleams.
I bet he would. He’s in astonishing shape, despite having been diagnosed with coronary heart disease at 38 and suffered a heart attack at 63.
The Channel will be a breeze. He’s been training all winter and eating like a horse.
He’s 70, but looks a good ten years younger, despite a family hoolie last night involving champagne, red wine and white wine.
And those enormous thighs. That chest. Those arms and the blindingly white teeth. He’s the man you’d always want on your side. Everything about him is solid and strong and powerful — including his very big heart.
‘I’m a team player. I’m here and I will be for as long as she and her family want me.’
So, finally, I have to ask, is the crying really new, or has it always been part of the secret Souness soft centre?
‘Of course I’m emotional when it comes to my kids — who isn’t? But I’m not a tearful person,’ he insists.
Not even over a soppy film or music?
He looks at me as if I’m mad.
‘Of course not! This is very much me out of my comfort zone. It feels strange.’
And a bit vulnerable?
‘Well, yes… But if it does, I’m quite happy to show that,’ he says firmly. ‘Isla is special. So don’t make me sound like I’m feeling sorry for myself, because none of this is about me. Or football. Or even the swim.
‘It’s all about Isla. The most amazing girl in the world who is suffering from a disease that we all need to know about and do everything we possibly can to help,’ he says.
And, yes, it goes without saying, his eyes are brimming again.
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