The children of a Glasgow firefighter who was once knocked back from pubs due to bouncers thinking he was 'too drunk' before being diagnosed with a devastating degenerative disorder fear they will inherit the condition.
Martin Barker was in his 30s when he was diagnosed with Ataxia - a degenerative disorder which affects speech, balance and coordination. Now 55, he was forced to take early retirement from his 25-year career with the Scottish Fire and Rescue Service due to his worsening condition.
He has now been left wheelchair-bound and unable to speak. Martin's two sons, Ewan, 24, and Michael, 28, act as his translator in public, with his family able to communicate with him.
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Speaking to the Daily Record, Ewan said: "My dad was one of the lads. He had a busy social life and lots of friends - the disorder has taken away his freedom.
"Losing his speech was really difficult for us all. All of a sudden he couldn't speak to anyone, whereas before you couldn't shut him up.
"My dad's symptoms began to progress. He would try to go to the pub and the bouncers wouldn't let him in. They thought his staggering and slurred speech was because he was drunk. It really took a toll on him."
Ewan continued: "My brother and I have discussed getting tested for the gene but neither of us want to know if we have it. It would affect me mentally.
"My brother recently moved in with his partner of 11 years. They have talked about him having the test before they have kids."
Martin did not know Ataxia ran in his family until his sister Karen, 56, who works as a nurse for the NHS had her symptoms recognised by a colleague. After a blood test confirmed Karen's disorder, Martin decided to take the test too as he realised he too was suffering the same symptoms.
Martin's wife Jackie, 57, said: "It's been absolutely devastating for Martin. He was diagnosed around our eldest son's birthday. I just remember being in a haze, trying to take it in.
"I couldn't get my head round the fact that our lives had changed in an instant. I'll never forget that day.
"It has been hard to watch Martin's independence slowly get taken away from him.
"The final blow was finding out the condition could be passed to our boys. They have a 50 per cent chance of carrying the gene. They've seen first hand how the disorder unfolds."
Martin's condition deteriorated following his diagnosis with Jackie becoming his full-time carer. On one occasion he fell off his bike and broke his leg when cycling home from work.
Ewan said: "My dad was aware his symptoms were getting worse, but the day he broke his leg was a real turning point.
"He struggled to get up off the ground because his balance was off. He had been shouting for help but his speech was so slurred people were just walking past him. They assumed he was drunk too.
"He had to drag himself to someone's front door and make signs for help.
"That was the moment he realised he wasn't going to get better."
Martin continued to work in the fire brigade, moving into an admin role when his condition could no longer handle the physical demands of the crew work. He was forced to take medical retirement in 2016.
The decision was a huge blow to the passionate firefighter who had 'loved saving lives' during his 25-year career.
Ewan and his boyfriend, Lewis Callan, 23, are now running a 5K every day in July to raise money for Ataxia UK. He said he hopes telling his dad's story will help to raise awareness of the condition and fund further research.
To donate to Lewis' fundraiser, click here.
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