‘It’s a tragic beauty. This incurable disease took me back to my childhood dream’

Davy Zyw was 30 years old and ­working in London as a wine buyer when he first noticed some ­numbness in his left thumb. After seeing a range of doctors, he was ­­diagnosed with motor neurone ­disease, a fatal and ­progressive ­condition that destroys cells in the brain and spinal column and leads to muscle wasting. There is a one in 300 chance of getting it across a lifetime, and there is no cure.

When he was diagnosed in 2018, Zyw was given only two or three years to live. And yet yesterday he became the first snowsport athlete to compete at the Paralympics with MND.

Zyw has embarked on a number of different athletic challenges since his diagnosis. In 2020, he cycled the North Coast 500 route in Scotland, taking in 500 miles in four days. “From being diagnosed, most ­people die within two years,” said Zyw at the time. “We wanted to mark the two years by doing something that was really tough and challenging, but very much life-fulfilling.”

Zyw completed the challenge with his twin brother, with the duo ­raising £150,000 for My Name’5 Doddie Foundation, a charity founded by Scotland rugby player Doddie Weir in 2017 to support people who have been diagnosed with MND. Weir passed away from the disease in 2022 at the age of 52.

Since then, Zyw has been unable to continue cycling as a result of neck fatigue arising from his condition, which makes it difficult to hold himself upright on a bike for long periods.

Together the twins have been ­participating in research carried out by Sheffield University on the link between exercise and MND. There have been a number of high-profile athletes diagnosed with the disease in recent years, including rugby league player Rob Burrow, who passed away at the age of 41 in 2024, as well as former Rugby World Cup winner Lewis Moody and footballer Stephen Darby.

“It’s hugely valuable to be able to study twins like Davy and Tommy Zyw who share the same DNA,” Dr Johnathan Cooper-Knock told The Sunday Post. “They allow us to work out the impact of inheriting a ­susceptibility to a disease and what makes someone develop, like working out the impact of nature and nurture. Identical twins allow you to keep the genetics fixed and compare like with like.”

Zyw, who is a strong believer that a cure for MND will be discovered one day and a lack of funding is holding that back, first began snowboarding as a child growing up in Edinburgh, where he attended the same school as Britain’s most successful Olympian, Sir Chris Hoy. His grandmother would take him and his brother to the Hill End dry slope, and he ­competed professionally in big air and slopestyle competitions until a knee injury in his early 20s put an end to his aspirations.

“I’ve got to say thanks to MND in a weird way – it’s like a tragic beauty,” he told Paralympics GB this week. “This incurable degenerative ­neurological disease has brought me back to my childhood dream of being a snowboarder.

“I’ve had to accept the impossible, accept my fate. But, within that, there was a freedom. A freedom that nothing is impossible and that’s the message I want people to take away.”

Zyw eventually put himself up for selection for Great Britain’s Paralympic team at the end of 2024, with support from his employers Berry Bros & Rudd, and crowd-funding.

He is in the SB-UL classification, which is for athletes who have impairments in either one or both of their arms. His event is snowboard cross, which involves heats against another athlete and banked slalom, a timed individual run on a course. He is the first UK Paralympian to have MND.

“I had this really weird scenario where I was hoping I was going to be disabled enough to compete,” he said.

Arriving in Cortina, Zyw took a fall in his first training session, emphasising the dangers in even making it to the start gate. “I learned a lesson,” he said on Instagram.

“I’m really lucky to be walking away from the crash I took today. It was a big scare after all the work and the time and the energy – the emotion invested in this journey. I need to make sure that I’m riding the best race but also that I’m in one piece.”

Training was then cancelled on Friday after a number of riders were hospitalised following crashes.

Zyw is up against some of the world’s best in his category, ­including Ji Lijia, who won gold in the snowboard cross four years ago at his home Games, and Italian world champion Jacopo Luchini.

“I’m so conscious that today is my best day,” Zyw said. “I’m only going one way. The fact that my son can see me compete on a world stage and rip down on my board, regardless of if I come first or last, I can’t even articulate the emotions wrapped up in there.”

Photography by Maja Hitij/Getty