'My rare disease is getting worse - I want more time to play with my children'

A dad-of-two from Edinburgh who has been diagnosed with a rare neurological condition is trying to raise £6,000 to buy a special suit which he hopes could help relieve some of his symptoms.

Daniel Fraser, 36, was diagnosed with Friedreich’s Ataxia, a progressive disease that causes mobility, speech issues and numbness.

Daniel was a teenager when he first noticed he was losing his balance. But it wasn’t until two years ago, when he was 34, that he went to the doctor when his mobility started to get worse.

After being referred to a neurologist, he was diagnosed with a rare condition called Friedreich’s Ataxia.

He said: “It was devastating. I had never really experienced anxiety before, but now I can’t help worrying about the future because the condition is always going to get worse.”

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.

Symptoms usually first develop before the age of 25, although they can develop in people much older than this.

With daily tasks like moving and showering becoming more difficult, Daniel says the impact on his family life is devastating.

He said: “I can’t run anymore; I want to be able to play with my children.

“They know that I’m not well, but they don’t understand.”

Daniel discovered a suit which isn’t available on the NHS, which could make it easier for him to walk. The Molli suit uses electronic waves to help relieve symptoms in neurologic disorders and chronic pain – he’s now trying to raise £6,000 through a GoFundme page to buy it.

Daniel is hoping that enough people donating will mean his dream of being able to play with his children once again could be a reality.

“I know everyone is struggling financially at the moment – but it would mean everything to me,” he said.

“It could help me walk for longer and better, and hopefully even extend my life. I always dreamed about being able to go skateboarding with my children – this suit could help make that possible.”