Edinburgh man walked 525km for 5-year-old nephew battling muscle wasting disease

An Edinburgh man has walked the equivalent of Edinburgh to Dublin to raise cash for his 5-year-old nephew who is battling a muscle-wasting disorder.

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Andrew Harkness’ cousin’s son Fionn was just three when he was diagnosed with Duchennes Muscular Dystrophy, a degenerative disease that attacks the muscles.

The brutal condition will worsen over time and those that are diagnosed have an average life expectancy only into their early twenties.

Andrew Harkness walked 24,500 steps a day, every day in April for Fionn Brogan Trust

Andrew said it has had a heart-wrenching impact on Fionn and his parents. But his family were dealt another major blow recently when his care team told them that Fionn’s mobility is deteriorating faster than they expected.

Andrew said: “Every time Fionn exercises or does any activity, his muscles don’t have the ability to heal themselves and grow. Over time Fionn won’t be able to climb stairs, play football or do so many of the things that he and kids his age love to do. His mum and dad Meave and Michael are having to grieve for their son. It breaks me. I have found the last year hard so I don’t know what it must have been like for them.”

In the same year Fionn was diagnosed with DMD, Andrew’s dad Bill was diagnosed with stomach cancer out of the blue.

Andrew decided to walk in support of Fionn and to mark his dad’s birthday after he’s come through a gruelling year of surgery, chemo and radiotherapy.

Michael, Maeve, Daniel, Fionn (in red) and Greta

The 36-year-old smashed his target four days early to complete 525km around Edinburgh in April to achieve distance equivalent to Edinburgh to Blackrock, Dublin where Fionn lives.

Andrew, who works in finance, said: “I wanted to do something to make life easier for Fionn. He’s such a smiley kid, he loves football, Spiderman, playing with his brother Daniel, 8 and his sister Greta, 3."

Andrew said: “He was taking part in trials at Great Ormond Street involving steroid drugs that could suppress symptoms but that finished just before covid-19 hit.

"We’ve not seen Fionn for two years now. What I’ve learned during the pandemic is family and health are the most important things in my life. That’s why for Fionn and Dad’s birthday in April, we wanted to raise awareness for a cause very close to our hearts.”

“It's been a hard-going year. Me and mum were so worried about Dad. We were crumbling. A year on since treatment he has a different life. I go out walking a lot with him. We went on 10k walk recently. Dad is one of the most resilient people I know.”

"On his birthday we talked about how we have everything we need. Fionn needs help with material things that can give him a better quality of life. When I’m doing the walk, I get tired and blisters. But I think of Fionn. He gets up every day knowing he can’t do the things he wants to do. That kept me going.”

READ MORE: East Lothian boy, 10, with muscle-wasting disorder to receive life-changing drug for another 3 years after Scottish Medicines Consortium decision

More than £7000 of Andrew’s £8000 grand target has been hit. Cash raised will go to the Fionn Brogan Trust to meet the costs of Fionn’s care, treatment and to help him maintain as independent a life as possible.

Money raised for the Trust has already helped pay for a van allowing Fionn to go on family outings with his power assisted wheelchair.

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