Andy, living with MND, completes the Rob Burrow Leeds Marathon, raising over £46,000 for My Name’5 Doddie Foundation

13 May 2025

Andy Vaughton, 47, from Poole in Dorset, said his world ‘crumbled’ when he was diagnosed with motor neuron disease (MND) in 2021.

Average life expectancy after diagnosis is just two to three years. Yet four years on, Andy, a former consultant anaesthetist, is determined to not let MND define him, and last weekend (11 May 2025), completed the Rob Burrow Leeds Marathon.

“This is about showing that it’s still possible to do something meaningful with the time you have,” he said.

A devoted father of three, Andy spent two decades working in the NHS. Outside work, he was an energetic sportsman - climbing, running, skiing and playing rugby with his local club and university team.

The first signs of MND came as far back as 2010 for Andy, when he noticed twitching in his muscles. Following a serious skiing accident in 2016, the symptoms escalated - cramps, tremors and weakness in his hands. At first, he put it down to nerve damage and underwent surgery in 2020, but the problems didn’t go away.

“I started noticing little things. I couldn’t open jars as easily, I lost an arm wrestle I’d normally win,” he said. “Eventually, I couldn’t ignore it.”

It wasn’t until 2021 - during the height of the COVID pandemic - that he was told he likely had MND. He was alone in the consultation room.

“I could see the look on the consultant’s face. He said: ‘I’m really sorry - it’s motor neuron disease.’ I held it together until I got to the car. Then I just broke down,” Andy said.

“My medical background meant I knew exactly what I was facing. It was utterly devastating - your whole life collapses in on itself. It affects everything - family, friends, work, the future you thought you had.” 

A second opinion and further tests confirmed the diagnosis. Andy tried to return to work but eventually had to step away, focusing instead on spending time with his wife, Susie, and their three sons.

“There’s a period where you live between two lives,” he said. “Your old one, and the new one you never asked for. You grieve each function you lose. But gradually, you find ways to live in the present.” 

Andy, who still coaches his sons’ rugby teams, says training for events like the Leeds Marathon gives him structure and hope. Despite losing significant arm function and needing special slings to support his limbs while running, Andy completed the 26.2-mile course in a run-walk strategy, supported by a team of family and friends - known as Andy’s Army.

Through his challenge, Andy has raised over £46,000 for My Name’5 Doddie Foundation.

Andy was personally contacted by Doddie shortly after his diagnosis - a call he describes as ‘life-changing’.

“I didn’t expect Doddie himself to ring - but he did. I met him once in Barbados when I was 22, and while he of course couldn’t remember that, he did remember the trip,” said Andy. “Even though his voice was failing, he made time to talk. He told me to live in the moment, to stay positive. That meant everything to me”.

Andy’s fundraising efforts have made headlines before now. In 2022, he and a group of friends played the world’s longest continuous beach rugby match - lasting 34 hours - raising almost £135,000 for My Name’5 Doddie Foundation and the MND Association.

Andy’s condition has progressed across his body, but particularly affects his arms and shoulders. He can no longer lift his arms for long periods, and running involves carefully timed bursts followed by walking intervals to allow his body to rest. Yet he still considers himself ‘fortunate’.

“I’ve been lucky that it’s progressed slowly. But I know it won’t stay that way forever,” he said. “There will come a time when I can’t do this - so I’m doing it now, while I still can. I have friends who’ve since passed away who weren’t fortunate enough to get this time, so I have to make the most of it.”

Whilst Andy ran the marathon, he thought of someone affected by MND with every mile.

“It’s painful, but it’s also a privilege. There are so many people who’d give anything to be able to do this.”

Andy’s wife Susie - a former GP who left medicine following his diagnosis to become a full-time writer and spend more time at home with him - says the experience has brought both grief and perspective for the couple and their sons Charlie, 15, Sam, 13, and Jack, 12.

“We’ve had to accept a very different life to the one we planned,” she said. “But Andy’s approach has been extraordinary. Even on the hardest days, he reminds me we’re still here. We still have each other.”

Andy hopes his efforts can raise awareness, but also help fund breakthroughs.

“There are no effective treatments. The drugs don’t do much. That’s why research is vital,” he said. “We need real progress, real hope. Hopefully for me - although I’m realistic - but definitely for those who come next.”

To support Andy’s marathon effort and donate to My Name’5 Doddie Foundation, visit justgiving.com/page/andy-vaughton-10.