My heart breaks for brave Isla – that’s why I’m swimming for her

WHEN your life has been football — playing for 20 years, then coaching and managing for 20 years — you grow accustomed to not displaying much emotion. Even though that life has brought me into contact with many people whose personal challenges are heartbreaking.

But I have to confess that it’s not easy to put the emotion aside when I’m in the company of the young woman I appeared with in a tV studio this week. I’ve known Isla Grist for five years now and come to learn a lot about the dreadful condition she is living with. I’ve also grown accustomed to her mischievous wit and sense of fun. But every time we meet she will say something that affects me deeply.

When we appeared on BBC Breakfast, discussing the skin condition which makes every day a huge challenge for her, she said in a matter-of-fact way that there were ‘other people with challenges too’. typical Isla. Always making light of the cards she’s been dealt and the difficulty of getting through every day.

she’s 14 and has Epidermolysis Bullosa (EB), a life-threatening skin condition also known as ‘butterfly skin’, which causes her body to blister and tear. It means hours of applying creams and, three to four times a week, the pain of changing her dressings.

I can say this without any doubt at all: I’ve never witnessed a crueller condition. I’m a vice-president of the charity DEBrA, which is raising awareness of the condition and fundraising — and which will soon be lobbying the Government for help. I’m sad to say that we currently have no Government help for the children who are suffering with this condition.

It’s also been my privilege to meet Isla’s mother and father, rachael and Andy, at their home in Inverness. there are times when Andy and I talk, as two fathers, and my heart breaks for him, carrying that desperation for a way to make his daughter’s life that bit better.

I had quite a serious operation 30 years ago, and yet have been able to enjoy exactly the same quality of life that I had before it. But for people like Isla, the quality of life is miserable. she’s living with a recessive disease, which means she must take a cocktail of the strongest of drugs — Diamorphine, Fentanyl and Ketamine — on a daily basis to try to get some pain relief.

I won’t see a cure for this genetic condition in my lifetime. to develop, trial and market a drug, that will take the best part of 20 years. But there are some very intelligent scientists out there, working to repurpose 20 drugs already on the market for conditions like psoriasis and eczema. the cost of doing so is £500,000 per drug. so multiply that figure by 20 to get a sense of the money needed.

TO help make that possible, I will be participating in a cross-Channel relay swim next month. Fortunately, I live on the south coast of England and have access to the sea. I’ve been swimming with some friends who are ex-military, who have pushed me hard over the last nine months. I can’t begin to tell you what heading into the water at 6.30am in January and February has been like, in the pitch black, with a green flashing light on my head. these guys are the best of the best in our military and I’m hearing the military jargon from them. When they tell me, ‘We’re wet at 6.30’ they mean you have to be in the sea at that hour. If you’re 30 seconds late, they just swim off without you.

the woman in our group, steph, is an excellent swimmer and an extremely competitive member of the team.

they’re all far better swimmers than I am and leave me behind in our training sessions — to the point last sunday where I lost them completely. Or rather, they lost me (they’re supposed to be looking after me!)

Instead of us doing an hour, I was in the water for two hours, 15 minutes and was going exactly nowhere towards the end because the current had changed. I noticed one of the team waving to me from the shore, to come in. ‘You’ve not moved one foot in the last 10 minutes,’ he told me, when I finally reached him. All this is a bit like being under the control of ronnie Moran, our coach in my playing days at Liverpool. I’m loving every minute.

since I talked about the Channel swim, some people have been under the impression that I’m going to do the entire 21 miles myself and that’s certainly not the case. I’m part of a six-person team and am expecting to be in the water for three to four hours. But we’re hoping this challenge will raise substantial funds for those clinical drug tests. We’re using the number I used to wear — 11 — to create a fundraising target of £1.1m for the swim.

the response since Isla and I spoke at the start of the week has been wonderful and I hope you might be able to help in some way, via the link below. I would value your support, though it is, of course, my courageous young friend you will be helping.