Like any father of a bright, bolshie 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 a decision to swim the English Channel.
“She was brutally honest at the beginning about my lack of training,” Andy says with a resigned laugh. “Isla doesn’t mince her words.”
But while her love of ridiculing her father makes her just like most children her age, Isla is different.
The Black Isle teenager was born with a rare genetic disorder called 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 and chronic pain.
The condition, which has no cure, has turned a normal family from the Black Isle – Isla, Andy, mum Rachael and 17-year-old sister Emily – into one of constant motion.
There are the trips to Raigmore Hosptial for the blood transfusions to combat Isla’s anemia.
Or travel to Great Ormond Street children’s hospital in London, where she has had 65 operations including attempts to treat her hands and feet, which have fused together.
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,” says Andy. “You want to protect and you want to take the pain away, but you can’t. You can’t take the condition away.”
Swimming the channel with Graeme Souness
But Andy is doing something. This week, the 49-year-old announced he will swim the English Channel to raise £1.1 million for butterfly skin charity Debra.
Also doing the 21-mile swim will be former Scotland football captain and TV pundit Graeme Souness, a dogged supporter of Isla’s since meeting her five years ago.
Souness’s involvement – a gesture that contrasts with his hardman persona – has sparked a whirlwind of interest.
When Andy speaks to the P&J he is between live appearances on BBC Breakfast and Sky News, with more to follow.
He doesn’t know it yet, but the BBC segment is about to blow up on Twitter because Souness – sitting next to Andy and Isla – cried as he recounted on live TV how moved he has been by the teenager’s courage and determination.
Graeme Souness is going to swim the English Channel aged 70 for a very special cause ❤️ pic.twitter.com/FtPHQMFG7P
— BBC Sport (@BBCSport) May 22, 2023
Butterfly skin and Isla Grist’s difficult upbringing
But despite his packed schedule, there’s no chance Andy is tired of speaking about Isla. He does so at length with what feels like hard-won stoicism mixed generously with fatherly pride at his astonishing daughter.
He talks about her birth in 2008 and how she was born without skin on her hands and feet.
It took time for doctors to diagnose what was wrong with the fragile infant, but once they did the people at Debra stepped in to help.
Brighton-born Andy was in the airforce at the time – he met his Invernessian wife Rachael when based at RAF Lossiemouth.
After the diagnosis, the family moved from Andy’s posting in Lancashire to the Black Isle to be near the support Rachael’s parents.
The changes were not just geographical.
“I was the kind of person who wanted a plan and remove some variables in it,” Andy says. “But it’s not possible to do that. I’ve almost had to change the way I think because there aren’t answers to some things yet.”
He also talks about the help Souness, 70, has given Isla over the years; the calls on her birthday or simply when she’s having a tough time.
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 says. “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.”
‘Isla knew more about Clare Balding that Clare did’
It’s not just Souness whose heart Isla has melted.
Sophie, the Duchess of Edinburgh is a big supporter, as is TV presenter and racing pundit Clare Balding, whose autobiography Andy reckons horse-mad Isla has listened to on her audio player more than 50 times.
“She ended up meeting Clare Balding,” Andy says, laughing. “And I think it rather through her for a loop because Isla knew more about Clare Balding that Clare did.”
These moments of lightness punctuate like blue sky the shadow of pain that lies over Isla’s life. For Andy, there were many difficult conversations, especially as Isla approached her teenage years.
And there have been questions that no parent ever wants to face.
“She would ask, why are you keeping me alive? What’s the point? I’m just in agony all the time,” he says.
“It’s a very difficult and emotive condition to deal with; having those conversations with a young teenager or an 11- or 12-year-old who’s in that much distress, wanting some hope of a cure, which isn’t quite there yet.”
The solace of swimming and chats with Isla
Andy inevitably feels the strain.
“I’ve had my own journey with my mental health,” he says, though he praises his “fantastic” wife Rachael, and Isla’s older sister Emily for the support they unfailingly provide.
And, in a neat twist, the cold-water swimming Andy’s been doing on Rosemarkie beach to train for the channel crossing has been a psychological tonic.
“There is some real solace in diving into the cold sea for an hour and swimming up and down,” he says. “You come out with a completely different mindset.”
The swimming also gives him something to talk about with Isla when he gets home.
The teen has moved past her initial scepticism about his fitness for the task ahead and now avidly follows his ocean tales of the North Sea jellyfish that hit him on the head or how he managed to dodge the paddle boarders.
It makes Andy happy, too.
“That’s one of the benefits of having Isla,” he says. “We just end up living in the moment, because none of us really know what’s around the corner.”
Andy is raising money for Debra’s A Life Free of Pain appeal, which will help pay for drug tests for treatments that could improve the quality of life for butterfly skin sufferers. To donate, click here.
