The Press and Journal (Inverness, Highlands, and Islands)
Dad speaks of ‘helplessness’ over daughter
Like any father of a bright young girl, Andy Grist knows what it’s like to be made fun of. Take, for example, the ribbing his 14-year-old daughter Isla dished out over his decision to swim the English Channel.
“She was brutally honest at the beginning about my lack of training,” Andy said. “Isla doesn’t mince her words.”
But while her love of teasing her dad makes her just like most children of her age, Isla is different. The Black Isle teenager was born with the rare genetic disorder epidermolysis bullosa.
People with the condition have extremely fragile skin that tears and blisters when touched.
For Isla, who has an extreme form of the disorder, it is not just her outside skin that is affected.
Her throat blisters making it impossible for her to eat, as do internal organs such as her bowels. Even her eyeballs blister.
She is in constant chronic pain.
The condition, which has no cure, has turned a normal family from the Black Isle – Isla, Andy, mum Rachael and 17-yearold sister Emily – into one of constant motion.
There are the trips to Raigmore Hospital for blood transfusions to combat Isla’s anaemia.
Or travel to Great Ormond Street children’s hospital in London, where she has had 65 operations.
And three times a week,
she has her bandages changed, a procedure that causes such excruciating pain she has to be dosed with a cocktail of drugs.
“As a parent, the most difficult thing is that sense of helplessness,” said Andy. “You want to protect and you want to take the pain away, but you can’t. You can’t take the condition away.”
Andy, 49, will swim the
English Channel to help raise £1.1 million for butterfly skin charity Debra.
Also making the 21-mile swim will be former Scotland football captain turned TV pundit Graeme Souness.
Souness’s involvement has sparked a whirlwind of interest after his tearful appearance on BBC Breakfast.
For Isla, who because of
her condition is isolated from much of the world, the pundit’s celebrity is something of a puzzle.
“She doesn’t know anything about football,” Andy said. “She just knows there’s this guy called Graeme. So whenever she’s with him and there’s queues of people standing around him getting signatures, it’s all a bit confusing.”