A Scots teenager who is in excruciating pain every day told how "squishy" Graeme Souness and her dad, Andy, are her heroes. Isla Grist, 15, was born with Epidermolysis Bullosa, known as Butterfly Skin, a life limiting, painful, genetic skin condition which causes the skin to blister and tear at the slightest touch.
Former Liverpool and Rangers star Graeme together with Isla’s dad Andy and a team including three Royal Marines, swam the English Channel earlier this year to raise money and awareness of the debilitating condition - raising £1.3 million in the process.
Isla said: “They conquered a massive swim. They swum from England to France to raise awareness. Even though people knew about it for a month before they had been training for nine. My dad was swimming in the Highlands in the middle of winter.
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“While I was sitting wrapped in a blanket watching television he was out swimming at our local beach in Fortrose. It got pretty cold. Graeme was training in Poole with the other members of the team. They all did fantastically well during the winter.
“They are my heroes, not just for me but for the whole EB community. They raised £1.3 million in a month. That’s incredible.”
She keeps in touch with all members of the swim team and said: “Graeme phones me every so often and we have a nice chat.”
But she confided: “I am not a massive football fan, actually, I am not a football fan at all.
“I don’t like watching much sport but to me Graeme isn’t football Graeme. He is just Graeme and he is kind, very kind. He has a bit of a hard shell but he is squishy inside.”
Isla was born with the condition and has lived every single day in agony. Her skin is permanently covered in bandages because her skin below them is blistered and bleeding.
Hospitals have always featured prominently in her life both Great Ormond Street in London and her local hospital Raigmore where she has “lost count” of the number of operations she has had but knows there have been more than 60 so far.
She said: “Hospital is just familiar. I have been in and out of them for as long as I can remember. A lot of people find hospitals quite scary but to me hospitals aren’t that strange. They are just an annoyance I have to put up with every so often.”
On average she is in hospital every two or three months. She has had more than 60 general anaesthetics for operations including those to stretch her throat so she can swallow food because the condition does not just affect external skin.
Eating can cause tearing in her throat so it needs to be wide enough not to add to her pain. She said: “That is the most regular procedure I have. It can be painful and I lose my voice for a few days, it sounds like I’ve got a terrible cold.
“I have it done four or five times a year. It can be quite tiring, daunting and annoying.” She has also had 15 operations on her hands - among the most painful of her many surgeries - because her fingers curl together.
Isla explained: “The operations are to stretch the fingers to make my tendons look slightly more normal. When I first got them done I had to have repeat operations to change the dressings for about six weeks.
“I think I will have to have them done again sometime.” She continued: “I don’t know day to day how it affects me. Trying to tell someone who has no idea what it is like is hard; it is like where do I start?
“But even getting up in the morning isn’t easy. I have to get my mum to help me get dressed, to go to the loo.” She has a cocktail of extremely strong painkillers four times a day which are administered through a feeding tube so she can avoid taking 10 different medications orally at a time.
Three times a week she has her dressings changed and has creams used to treat burn victims applied to the open weeping wounds which cover her little body. The procedure can take up to five hours. And Isla admitted: “It hurts when the cream is applied.”
She continued: “I don’t know if there is any way to describe the pain I am always in. It is at a high level. It is constant. It’s itchy. It tingles. Sometimes your body feels as if it is on fire.”
Her medication helps to control the pain but she has to rely on distractions like television to take her mind to another place. Her one true love is horse riding but it comes at a price.
“I like horse riding, that’s a big passion of mine but it does take a toll on my body. I know it is going to hurt afterwards but the enjoyment of it is so worthwhile for me that the pros outweigh the cons.
“It can tear the skin on the insides of my legs and my muscles ache but when I am on a horse I feel free of all of it.” Other activities are out of her reach but with a maturity beyond her years she said: “I just try not to think negative thoughts.
“If I think of things outwith my reach it can pull me down into quite a dark place. Sometimes I get down but it doesn’t help if I stay negative. It’s not going to take it away.”
Despite her illness she remains a normal teenager and although her dad is her hero and she credits her mum for taking great care of her, she admitted: “They can get very annoying sometimes. Sometimes my dad can annoy me by just walking into the room.
“But I don’t know what I’d do without them.”
Her big sister Emily, 17, is her closest confidante and she really misses her since she left home recently to study International Relations and Sustainable Development at St Andrews. Fourth year pupil Isla attends a virtual school in the Highlands.
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She is not sure what qualifications she will sit next summer saying “we’re playing it by ear at the moment”. When school is over she hopes to work in computers - possibly in programming - but these decisions are still a long way off.
Her real dream is for a cure for her condition. She said: “There is more awareness now thanks to my dad and Graeme but it also needs resources and personnel.
“Conditions like mine aren’t getting enough resources from the government really. The UK and Scottish Governments should definitely be doing more.”
And she said: “My dream is essentially for a cure so people like me do not need to be like me. A cure is what we are aiming for but at the moment that is slightly out of reach.”
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