He's the football hardman who never gave an inch on the pitch but Graeme Souness reveals he sobbed his heart out when he learned about a cruel and incurable skin condition.
The Rangers, Liverpool and Scotland legend said he was in bits after hearing about the painful life-limiting condition epidermolysis bullosa (EB) at a dinner five years ago.
Since then, Souness, 69, has helped raise more than £500,000 for DEBRA – the charity which supports EB sufferers, whose skin blisters and tears at the slightest touch.
The former Liverpool and Rangers manager said he gets emotional every time he speaks about the disease often referred to as “Butterfly Skin”.
Graeme, who is remembered as one of the toughest men in football, said: “It just gets to me. Have you ever seen a sufferer? It’s awful, not just for the sufferer but for the helpless families who have to watch their children suffer.
“My friend’s neighbour had a son called Oliver Thomas who had the condition and five years ago I went to a charity dinner at the Royal Kensington Garden Hotel in London and I sat next to his mum and dad.
“I was blown away when I heard what they had been through, then a young girl called Myra took to the stage and spoke about what her life was like living with EB. That was it. I was in bits.
“I have been to countless charity dinners but something about this devastating disease grabbed me more than anything else had grabbed me and I swore then and there I was going to do all I could to help.
“How had I never heard of this terrible condition that can leave sufferers with third degree burn-like wounds if they get a slight knock or are hugged too hard? I needed to do something.”
Souness, who grew up in Edinburgh, added: “That night was a wake-up call for me. There I was aged 65 sitting there feeling pleased with myself when there were all these young people out there suffering.
“I phoned Jaye Hamilton, who looks after DEBRA in Scotland, and the next day I travelled up to Glasgow to meet her. I told her I was all in and what could I do to help with raising both awareness and funds.
“That was five years ago and I’ve helped raise a fair bit of money through sportsman’s dinners and the Kiltwalk but enough is never enough and I am determined to do more.
“DEBRA has launched a campaign to try and raise £5million before the end of this year to fund clinical trails into treatment and I’m doing what I can to help them.
“I’m hosting a sports quiz in Glasgow next month and there is something huge happening later in the year that I can’t talk about yet. I would do anything to help these kids and their families.”
Graeme, who now lives in Poole, Dorset, has become close to EB sufferer Isla Grist and her family who live on the Black Isle near Inverness.
He said: “Isla is 14 now and she inspires me every time I am in her company.
“She has courage and bravery on a completely different level to anything I have ever witnessed. She is in constant pain but always smiling.
“Isla is such an impressive young woman. She is smart, funny and so courageous and strong that she makes you feel pretty average about yourself.
“You take a look at her and think, ‘I’m not such a strong character after all’.
“I have six kids and she makes me realise how lucky I am that they are all perfectly healthy. I cannot begin to imagine what it is like for the parents of EB sufferers.
“As a mum or dad, you want to take away their excruciating pain and not have them hurt anymore but you can’t. I’ve had conversations with Isla’s dad Andy about this and it is heartbreaking.”
Graeme, who is now vice-president of DEBRA, added: “Falklands hero Simon Weston is president of the charity. He endured horrific burns when his ship Sir Galahad was bombed during the conflict.
“He often speaks about how he thought he was never going to get through his ordeal but he did and how the same cannot be said for the EB kids as there is no cure.
“When you hear that, you realise just how horrific this condition is.
“In my opinion, it is the worst of the worst and it’s vital we keep fundraising for treatments.”
The Sky Sports pundit is looking forward to the DEBRA Big Sports Quiz, which will take place at the William Street Hilton Glasgow on March 19.
The evening of sports trivia will be hosted by radio and television presenters, Jim White and Emma Dodds and will be attended by a host of sporting legends and commentators including Frank McAvennie, Chick Young, Simon Jordan, John Beattie, Martin O’Neill, Hannah Rankin, Lisa Martin and Shelley Kerr .
Graeme said: “The quiz is going to be good fun. We’ve done two dinners in the past – a Scotland England and an Old Firm one with Martin O’Neill, Neil Lennon and the late Walter Smith. These were both a roaring success and hopefully the quiz night will be too.
“You sometimes feel guilty about going to these things and having a great night when you are raising money for something so tragic but then you realise the good the money can do and the awareness you can raise. I’m hoping all us old footballers don’t embarrass ourselves on the night. Depending on the questions, we could come across as borderline geniuses but if the wrong subjects come up we could be stuffed.
“I am a massive fan of The Chase. Some nights I do really well and other nights I do really badly. Let’s hope when March 19 swings around I will be having a good night.”
He added: “People think I am X when really I am Y. I may have played hard on the pitch but I’m a big softie when it comes to EB. These kids take the word courageous to a whole new level and I will continue to strive to do what I can to help DEBRA support them and their families.”
TEENAGER Isla Grist was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB) and her skin is so fragile a hug can give her ‘third degree burns.’
Isla’s condition is so severe even the inside of her throat can blister, requiring her to be tube fed and she has spent most of her life wrapped head to toe in bandages and needs a carer at school.
Despite, being in constant pain, the 14-year-old from the Black Isle, in the Scottish Islands, refuses to let life get her down and she inspires everyone she meets.
Dad Andy, 49, said: “Isla’s skin is very fragile, both all the parts you can see and the linings of her mouth, throat, stomach and rest of the inside of her fragile wee body. Some wounds she has dealt with and the pain and anxiety she has lived with can be extremely upsetting.
“Isla has already had more than 60 operations, under general anaesthetic, at Great Ormond Street Hospital. She is often courageous and stoic beyond words, yet always kind and thoughtful to others who are usually far more fortunate than her.”
He added: “Support from DEBRA has helped us in our everyday lives from the very beginning of this journey.
They gave us access to specialist advice and care for Isla, someone to talk with, some of the answers and much welcomed support, both practical and emotional. I know that Isla wants what we all want: a life free of pain. She has told me this and it was hard to hear but impossible to ignore and to we must continue to fight EB.”
- To buy tickets for the Big Sports Quiz email karen.power@debra.org.uk or to donate go to www.debra.org.uk
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