Son fundraises in dad's memory while knowing he’s at risk of incurable disease

02 May 2023 , 13:10
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Alex and Kate after crossing the finish line of the London Marathon (Image: Scottish Huntington
Alex and Kate after crossing the finish line of the London Marathon (Image: Scottish Huntington's Association/Alex Wilson)

A dad has taken on the London Marathon with his daughter, raising funds for the families of those suffering from Huntington’s disease.

Alex Wilson, 59, from Edinburgh, watched his father’s health deteriorate with the rare condition when there was very little support for families of those with Huntington’s.

Through that experience, Alex said he’s determined to ‘do what he can’ for other families in similar situations now.

Huntington’s is a genetic condition that has a 50 per cent risk of being inherited, with symptoms likely to develop between the age of 30 and 50, Edinburgh Live reports.

Despite this, Alex is yet to be tested for the faulty gene and doesn’t know if the condition may appear at some point - while his brother Graham has already been diagnosed with it.

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He said: “I was going to find out a few years ago, but just as I received my appointment I discovered I needed a major operation for a complete knee replacement.

“That was enough to deal with, so I chose to have the surgery and leave the test.”

After recovering, Alex took on the marathon along with his daughter Kate, 29, and managed to raise over £4000 for the Scottish Huntington’s Association. He added: “The London Marathon was amazing, especially because I was running with Kate who first suggested that we do it together.

“It was her idea and without her I don’t think I would ever have done it. We loved the atmosphere and the music, and the crowds went wild when they saw our Mario and Luigi outfits, and we got lots of high fives as we ran.”

“I hadn’t run a marathon for more than 30 years and it was my first time in London so it was an adventure for both of us. We were both very emotional crossing the line with a time of just over five hours.”

Now, Alex is limbering up again to participate in the Dance 100 in Glasgow. Along with his other daughter Chloe, he’ll be spending five hours in George Square dancing along to 100 different songs.

He continued: “I love dancing as much as I love running and we’ll raise much-needed awareness about Huntington’s disease and how it impacts families across Scotland, including my own.

“I was 14 when I found out about the disease and it was difficult to watch it overtake my dad. He became more reclusive and had significant physical and mental health symptoms. As the oldest of four children, I felt it was my responsibility to help Mum care for my dad and my siblings. Unfortunately, Dad was only 47 when he passed away.”

Huntington’s disease begins due to a faulty gene which damages the brain, leading to complex physical and mental symptoms. Those suffering with the condition can lose their ability to walk, talk, eat, and swallow.

Early onset dementia, behavioural changes, and serious mental illnesses can also appear. Many require 24-hour care.

'So fed up of tiresome pal flirting with my husband and always putting me down''So fed up of tiresome pal flirting with my husband and always putting me down'

You can find out more about Huntington’s disease, and the work of the Scottish Huntington’s Association, here.

Lee Dalgetty

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