Dad with rare condition 'overwhelmed' after public raise £6,000 for electronic suit

A Midlothian dad who fundraised to buy an electronic suit to help to ease the symptoms of his rare neurological condition says it’s made playing with his children easier.

Window cleaner Daniel Fraser, 36, has a rare neurological condition called Friedreich’s ataxia, a progressive disease that affects mobility, speech issues and sensation.

Now he hopes access to a new drug could help slow the progression of the disease.

Last year the dad-of-two told STV News about his efforts to raise £6,000 for a specialist suit, designed to stimulate muscles using electrical signals.

Dad's electronic suit helps him play with kids — Dad’s electronic suit helps him play with kids STV News

He has since reached that goal and says the device is already making a difference.

The suit works by sending electric signals to muscles to improve communication between the brain and the rest of the body.

“Thank you to everyone who donated, it’s overwhelming how generous people can be. It makes me feel emotional.”

He said the suit allows him to relax more and helps him play with his daughter and son.

“Some people feel a tingling sensation but I don’t feel anything, probably because of my nerve damage.

“I was really hoping that I would be able to skateboard again with my children; I still can’t do that, but I can play with them easier than I did before. We like going to the zoo together and my son likes playing air hockey.

“I think the suit has done as much good as it is going to do. As long as I keep using it, hopefully I can maintain my mobility as long as possible.”

The suit uses electrical stimulation to relax muscles and improve coordination. STV News

Window cleaner Daniel says he may have to look for other work as his condition progresses STV News

Friedreich’s ataxia is a progressive genetic neurodegenerative movement condition that is thought to affect between 1,200 to 3,400 people in the UK.

Symptoms can include gradual loss of coordination and muscle weakness, as well as difficulty walking and impaired speech.

While it typically develops before the age of 25, it can also appear in later life.

Daniel was a teenager when he first noticed he was losing his balance. But it wasn’t until two years ago, when his mobility started to get worse, that he sought medical advice.

After being referred to a neurologist, he was diagnosed with Freidrich’s ataxia, news he described as “devastating” for him and his family.

In the two years since, he has made efforts to stay active. He exercises and takes cod liver oil to help his symptoms and he also works one shift a week, though he knows that may not always be possible.

He is now hoping to be given access to a new drug Omaveloxolone after a visit to a clinic in Sheffield next month.

Daniel regularly plays the Rubik's cube to maintain dexterity in his hands — Daniel regularly plays the Rubik’s cube to maintain dexterity in his hands STV News

“It varies from person to person, but it slows the progression,” he said. “So, once I’ve been to the specialist clinic, hopefully I can get the medicine and it can help me even more.”

In the meantime, the combination of the suit and regular exercise is essential.

He’s also found another way to maintain dexterity in his hands; playing the Rubik’s Cube.

“It helps with my fine motor skills. It affects my handwriting and typing on a computer; that’s to do with tightening, which will make it difficult when I have to look for another job.”

Daniel is going to continue a tradition of taking part in the Edinburgh Kiltwalk in September to raise money for Ataxia UK – and increase awareness of the condition.