‘I want to be the first person with MND to compete at the Paralympics’

When he received an earth-shattering motor neurone disease diagnosis, aged just 30, Davy Zyw took out a piece of A4 paper. On it, he scrawled “today”, wrote a bucket list of things he wanted to do, then signed off with “death”.

He had been told he had as little as 18 months to live, three years at most, and backpacking through Patagonia, starting a family and enjoying a curry every Sunday were among the life adventures he wanted to embark on while he had time left. Having defied doctors’ expectations, the now 38-year-old has added another: to become the first person with MND to compete at the Winter Paralympics.

A snowboarder who had once raced down slopes competitively, he jumped back on his board a year ago in pursuit of a “mad” goal to make it to the 2026 Games in Milan-Cortina.

Zyw, from Edinburgh, counts himself as one of the lucky ones. Although his condition has progressed slowly, he has lost most of the functionality in his hands. Muscles in his torso, shoulders and arms are already wasting away, but he still has enough motor control to guide himself down snow-capped peaks.

“I might need help putting my gloves on, zipping up my jacket or getting into position, but when I’m riding, I’m feeling the same enjoyment I did when I was 12 years old,” Zyw tells Telegraph Sport. “It’s about living in that very moment and being nowhere else, absolutely present and focused. It’s pure escapism from the challenges I face daily with this disease and it’s about focusing on what I can do, rather than what I can’t.”

‘Every time I saw a different doctor, it got more and more serious’

When Zyw’s left thumb became “paralysed” on holiday in 2018, doctors suspected a case of carpal tunnel syndrome, a numbness in the fingers often caused by repetitive tasks and a common complaint among gym-goers. As someone who was young and fit, there was little reason to suspect Zyw had a devastating neurological disease.

“I got passed around like a pinball, seeing doctors and specialists, even doctors who specialise in tropical diseases,” Zyw says. “There was a suggestion that I’d been bitten by a poisonous animal when my girlfriend and I were [on holiday] in Costa Rica or that I’d been exposed to radioactive materials that I didn’t know about. They were looking under every rock for why I was losing strength and dexterity. Every time I saw a different doctor, it got more and more serious.”

Zyw was eventually diagnosed with MND, but did not want to be defined by his condition. After being cleared to compete by the International Paralympic Board, he has spent the past year racing on the snowboarding para-circuit alongside competitors with upper-limb impairments, supported by various sponsors and his wine merchant employer, Berry Bros. & Rudd (Zyw is a qualified sommelier).

In the past few months he has taken podium finishes in Finland and the Netherlands, beating many full-time para athletes who have dedicated years to qualifying for a Winter Games, and climbing to fourth in the Europa Cup rankings. In many ways, he is already a history-maker.

‘I’m acutely aware that every minute counts’

“I’m the first person with MND to be on the circuit,” says Zyw, who is susceptible to severe fatigue and muscle cramping on the slopes, which are exacerbated by the cold. “Most people I’m up against have static injuries, so they might have been born without a hand, or lost an arm, or part of an arm, in an accident, but they just face the full functionality. My general strength and my explosiveness, for instance pulling out a gate, is weak compared to many. I’m not cruising down like I once did on a snowboard. That physicality is something I’m struggling with, but I’ve been really enjoying the challenge.”

His relentless training has meant Zyw spends weeks abroad away from his wife, Yvie, and their young son Aleksander, in Edinburgh. “That’s the most difficult thing by a country mile,” he says. “I’ve got more limited time on this planet than most people and I’m acutely aware that every minute counts. I live a full life and I’m very grateful for that, but every minute still going is a minute away from my boy. I’ve had to weigh that balance up. But I’ll know by the end of the month if I’m in or out [for the Paralympics], so it’s one last push to see if I can get there. If I do make it, to see their faces out in Cortina will make it all worth it.”

Zyw must make the podium at races in Switzerland and Austria this month to secure invitations to next-tier events, including a potential World Cup meet in Canada, if he is to earn enough ranking points to reach the Paralympics. “There’s a sort of tragic beauty in the fact that this disease has brought me back to my favourite thing which, apart from spending time with my wife and son, of course, is to go snowboarding,” he says. “It’s an enormous challenge, but bring it on.”

Even if he falls short of his goal, you expect Zyw’s bucket list will keep on growing – and he will continue to raise awareness for MND. He has been involved in numerous events that have raised more than £1m for MND charities, including the My Name’5 Doddie Foundation, which was founded by former Scotland rugby player Doddie Weir.

Zyw and Weir, who died from the disease in 2022 aged 52, became close friends. They shared many of the same MND specialists and Zyw has undertaken his own fund-raisers for Weir’s foundation, fuelled by a quiet anger.

“I’ve been on the same daily medication that’s been available through the NHS for all MND patients for 20, 30 years now,” says Zyw, who has taken part in multiple drug trials. “It’s not good enough. MND is not incurable, it’s underfunded.”

Find out more about the My Name’5 Doddie Foundation here.