Mark Barrett, from Howwood Renfrewshire, lost his dad – a popular Glasgow bookie – his grandfather and uncle to Huntington’s disease.
Mark Barrett with his late dad Frank, a popular Glasgow bookie who died after a battle with Huntington’s(Image: DAILY RECORD)
A dad whose family has been plagued by Huntington’s disease is on a mission to help break the stigma of the “cruel” illness.
Mark Barrett, from Howwood Renfrewshire, lost his dad – a popular Glasgow bookie – his grandfather and uncle to the disease, an inherited faulty gene that damages the brain.
The 38-year-old dad-of-two is in the middle of a gruelling attempt to raise awareness – taking on four half marathons and a triathlon in a matter of weeks – after medics revealed a breakthrough had allowed them to successfully treat the disease for the first time.
Mark, a business owner and actor who has worked alongside stars like Robert Carlyle and James McAvoy, said he wants to help ease the pain of other families after losing dad, Frank, whose Maryhill betting shop featured in Trainspotting and Still Game.
His challenge – covering over 100km in nine weeks – has also been backed by author Irvine Welsh.
Mark is in the middle of a gruelling challenge(Image: DAILY RECORD)
Mark said: “I’ve grown up around Huntington’s all my life.
“My uncle Raymond died when I was four or five. He was just 33 and in the early 90s it was largely an ignored illness.
“I had never met my grandfather John, who died in his 60s. But in July 2021 we lost my dad under the most cruel circumstances.
“Not just because of the disease, but because it came at a time through Covid when we weren’t allowed to see him. He was taken away from us and we were very limited in our visiting hours and time to spend with him.
“I want to help families affected because I know how crippling and how cruel it can be in all areas of life.”
The disease can affect a sufferers’ ability to walk, talk, eat, drink and care for themselves.
Frank began to experience symptoms late into his 60s and would sometimes have difficulty walking.
Mark said he wishes he could have been more transparent with those who asked about what his dad was experiencing.
Glasgow bookie Frank Barrett suffered from Huntington’s(Image: DAILY RECORD)
He said: “His tagline was ‘Glasgow’s biggest bookie’. That had a lot to do with the fact he was 6ft 2in. But there were three or four big names in Glasgow and Frank Barrett was one of the biggest.
“He was a larger than life character and well respected and liked in lots of different circles.
“Around the late 90s his shop became infamous as it was used in Trainspotting, in the scene where Renton runs in at the start.
“The last few years of his life we noticed a decline physically and cognitively and sadly, on my mum and dad’s wedding anniversary, my mum left the home and he died in my arms the next day.”
Anyone with a parent who has Huntington’s has a 50% risk of inheriting the condition from them.
Mark says he has no desire to know if he is carrying the gene that has devastated his family.
He said: “If it comes back positive then we will forever live in the shadow of this. But you can test positive and never be affected by it.
“For every family affected its entirely personal to their position. I haven’t been tested and I don’t intend to.”
Mark has completed the Edinburgh half marathon(Image: DAILY RECORD)
Mark completed the Great Scottish Run on October 4 and the MacQueen Bros Mid Argyle Triathlon on September 28 – finishing in the top six.
He is now gearing up for the Bellahouston Half Marathon, Strathclyde Country Park Half Marathon and a Movember Half Marathon, aiming to complete his challenge on November 23.
He has so far raised more than £3,000 for Scottish Huntington’s Association.
He said: “I’m doing this to help other families affected because I know how incredibly lonely and frightening it can be.
“There can be a misconception of what the illness can do. That’s the nature of it because there are so many different facets of the symptoms.
“Don’t be afraid to talk about it. We spent a long time trying to protect my dad.
“It’s not a taboo subject. It’s something that unfortunately isn’t going away whether you talk about it or not. “
Mark was overjoyed after the revelation last month that data around a new gene therapy given during delicate brain surgery indicated the disease had been slowed by 75% in patients.
Mark as a child with dad Frank(Image: DAILY RECORD)
He said: “I would like to see the money raised go into both research and family support. While research is hugely helpful it’s also important for families to have the safest environment around them for people needing end of life care or support.”
Mark, who runs his own industrial cleaning firm, once stepped into the role of Robert Carlyle when the Trainspotting star was directing a movie he was also starring in, The Legend of Barney Thomson, helping him set the scene with big name stars like Emma Thompson and Ray Winstone before takes.
His acting background helped his charity mission grab the attention of writer Welsh.
Mark said: “Irvine Welsh got in touch and shared my story on his page, which was incredible overwhelming. I’m so grateful for all the support I’ve had so far.”
The dad is now hoping to double his initial target of £2,500 target and is considering a further challenge.
Scottish Huntington’s Association Chief Executive Alistair Haw: “This is a hugely challenging time for the charity sector, which is why we are especially grateful to Mark for his fantastic efforts to raise funding for our cause.
“Last month we heard the wonderful news that the first treatments for Huntington’s disease may be appearing on the horizon. This will require more capacity in the health and social care system to cope with the demand.
“Sadly, Glasgow City Health and Social Care Partnership is planning to become the first area in history to defund our Huntington’s Disease Specialist Service. This was always an ill-conceived false economy, but in light of the recent research breakthrough it’s clear that this plan is exactly the wrong thing at exactly the wrong time.
“A majority of eligible MSPs of all parties are calling for a rethink. We call on Glasgow City HSCP to listen and ensure that common sense prevails, and thank Mark once again for what he is doing to raise both the profile and of, and funding for, our cause.”
To support Mark’s mission, donate here.