Bid to ease 'extreme pain' of Highland schoolgirl (14) inspires Scotland football legend Graeme Souness (70) to take on gruelling English Channel swim to tackle torment of epidermolysis bullosa (EB)
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A HIGHLAND teenager living with a devastating 'butterfly skin' condition has inspired a Scottish football legend to take on the English Channel at the age of 70.
Isla Grist (14), a pupil at Fortrose Academy, suffers from epidermolysis bullosa (EB), an incredibly painful skin blistering condition more commonly known as ‘butterfly skin’, due to the patient’s skin being as fragile as a butterfly’s wing.
Graeme Souness, Scotland and Rangers legend and known to millions now as a fotoball pundit – is
swimming the English Channel in June to raise £1.1m to fund drug testing to stop the pain of epidermolysis bullosa (EB).
EB is an incredibly painful skin blistering condition more commonly known as ‘butterfly skin’, due to
the patient’s skin being as fragile as a butterfly’s wing.
Isla is living with recessive dystrophic epidermolysis bullosa.
The fear of cold, dark, potentially rough open water, jellyfish, sewage, the busiest shipping lane in the world all motivate me to train to be ready for the swim to France this June.
Her pain made a huge impression on Souness and inspired him to take on the mammoth challenge.
He said: “From the time I have spent with Isla and her family, I have seen first-hand the extreme pain this devastating condition causes and the daily challenges it creates for them. I wanted to do something that could make a difference to Isla’s life and to the lives of so many others living with EB and the slightly crazy idea of swimming the English Channel was suggested.
“Now I’m not one to walk away from a challenge but this is all new to me; despite living by the sea for the past 16 years, I’ve never been in it, and Isla is the only reason I did. Alongside Isla’s dad, Andy, and the rest of the team, I am determined to complete the Channel crossing, to raise awareness of EB, and to raise the funds that DEBRA so desperately needs. Please support me, every pound raised gets us one step closer to a world where no one suffers with the pain of EB”.
The household name, who recently celebrated his 70th birthday, will take to the water on Sunday, June 18 in a swim which could take up to 16 hours.
Souness, who wore the no.11 for the majority of his playing days, aims to raise £1.1m to enable DEBRA, the butterfly skin charity, to clinically test drugs already available within the NHS that could radically improve quality of life for people living with EB.
Isla said: “My Dad was not the best swimmer before he agreed to swim the English Channel with Graeme for DEBRA. Dad’s been training hard in the sea and pool, including through a tough Scottish winter, and I’m so proud of him and Graeme for pushing themselves like this to try and help raise awareness of EB.
“EB is brutal, trust me, and we need as many people as possible to join the fight to stop the pain of
EB.”
Joining Souness on the swim is Isla’s dad – despite not really being able to swim very well prior to beginning training. Now, with rough seas ahead, Andy is facing his fears, inspired by his brave daughter’s daily battles.
He said: “I know that Isla wants what we all want: a life free of pain. A life free of the fear that EB will continue to devastate her increasingly fragile body. She has told me this and it was hard to hear but impossible to ignore and to we must continue to fight EB. That’s why I am privileged to be joining the team swimming the English Channel. This will be a huge challenge for me, I was definitely not an accomplished swimmer when I agreed to take part. Indeed, the challenge has been very much on my mind since I found out what swimming in the channel was actually like!
“I have chosen to confront this and feel fortunate to join a team of fantastic DEBRA supporters. The fear of cold, dark, potentially rough open water, jellyfish, sewage, the busiest shipping lane in the world all motivate me to train to be ready for the swim to France this June. A journey the team has chosen and will do everything possible to complete successfully.
“Isla hopes for success in her much longer, harder, more painful journey with EB, a journey she never had a choice about and also cannot complete alone. Please, please, be part of her journey with us. The money raised from our Swim21 will go towards giving Isla, and the 5000 people like her in the UK, a life free of pain. From repurposing existing drugs to improve her quality of life to funding new treatments, we know together, we can make a life free of pain possible.”
And as he prepares to embark on this huge challenge alongside his friend Andy, fighting to raise awareness and money to help Isla and others like her in the UK, Souness is ready to push through the pain – just like Isla, every single day.
“I had been totally unaware of the level of training, commitment and emotional reserves it would take to get me ‘match fit’ for this challenge. But, like the rest of my team, I stuck with it and my confidence increased with each swim. There have been some difficult moments, I won’t lie, in freezing winter waters. But with a great coach, who has pushed me to do better with each swim, my DEBRA team and my trusty wetsuit, I am now actually enjoying the dawn training sessions in the sea. I am not complacent but I now feel I’m where I need to be to meet this challenge.
"I know swimming the English Channel will be a mighty challenge but it is nothing compared to what Isla and people like her, face every single day.”
To sponsor Graeme Souness and the team’s English Channel swim please visit www.give.as/DEBRAswim
