It was the year we locked down and wrapped ourselves in a thick blanket of isolation. But for some the virus rekindled our love affair with the bike and there was something almost magical about seeing parts of the country turn into the Netherlands overnight. For Tom Kelsall it delivered an opportunity he might never have dreamed of otherwise. It took him from ripping the legs off cyclist and YouTuber Francis Cade around the Surrey Hills to the very top step of the notorious ramp test. Now the door stands open to Special Olympics glory.
Tom Kelsall. Remember the name because when they hang the gold around his neck there will be something in your eye. With the sweet, shy smile of a young man caught between boyhood and adulthood, he has the same monosyllabic answers as any teenager. But he has charisma too, and a quiet determination he has demonstrated all his life.
Tom was a floppy baby, his dad Neil says. While his twin brother gurgled and crawled and hit the various milestones of life, Tom struggled and was quiet. From the age of 18 months he started receiving intensive therapy – physio, occupational and speech – but the family remained in the dark about his condition.
Moving to the US for work gave them the opportunity to consult some of the best geneticists in the world, but the news was brutal. “It’s a day I’ll never, never forget,” says Neil. After Tom went through a battery of invasive tests, the family were told he suffered from “mental retardation” and that “one day his development would simply stop”. Neil remembers the shock but also notes that “everything we’d seen from Tom told us that wasn’t going to be the case.”
Crucially, no one told Tom. At 20 months he crawled across the floor, over the back of the family dog Roscoe, and pulled himself upright – in front of a roomful of therapists who couldn’t quite believe what they had just seen. “He looked around as if to say ‘I can do this,’” remembers Neil. “Then he decided he was going to walk and he practised for hours until he nailed it.” And that, says Neil, is the spirit of Tom: “He does what he can to prove people wrong.”
His initial diagnosis was wrong. Tests in the UK showed Tom was born with Koolen de Vries Syndrome, which causes developmental delay and learning difficulties. For Tom it means a severe language and communication impairment that affects his receptive and expressive language abilities and his ability to process information, and dyspraxia that affects his fine and gross motor control. He has trouble controlling his airways, which makes everyday tasks such as blowing his nose difficult. His movement looks clumsy and his mild to moderate learning difficulties affect how he rides his bike.
“He has to work really, really hard just to get things going in the right direction,” says Neil. “He has limited spatial awareness so is never left to ride on the road alone.” Tom is never “relaxed” on the bike, his dad points out. He has to focus hard to remain upright and balanced and get his feet positioned correctly. It has taken hours of practice just to pedal smoothly.
Then, at the age of nine, Tom was diagnosed with type 1 diabetes. His pancreas shut down and stopped producing insulin. Tom’s processing issues also complicate his diabetes management. “He can’t tell us if he is cold or hot, if he feels unwell or why he is sometimes sad,” says Neil. But just weeks after the diabetes diagnosis Tom, his father and twin brother Archie climbed the final 5km of Mont Ventoux, the gradient rearing up to 10%, Tom on a 20-inch mountain bike, eating a handful of jelly babies every few minutes. Undaunted.
It would be easy to medicalise Tom’s story, turn it into a glibly inspirational one, or simply list the hundreds of miles he has ridden and the thousands of pounds he has raised for diabetes research. But above all this is a story about attitude and determination.
As a boy, Tom played for his local football team. It gave him a sense of inclusion and community, and he made some good friends. “Playing for the team was the be all and end all,” says his dad. But sport can be cruel when it stops being inclusive. After six years on the team, one of the coaches called to say there was no longer any room for Tom. “Football was ripped away,” says Neil. Tom and two other autistic players had been excluded “because they didn’t want to be known as a team of oddballs”. The Kelsalls took the matter to the local FA but the damage had been done.
“Our little boy changed,” says Neil. “His self-esteem and self-confidence were shot to bits.” Football left a massive gap in Tom’s life. His parents explored the idea of special teams but “Tom didn’t want to do that – he didn’t want to be reminded of his differences”. He has since joined a team where he is comfortable being himself.
Anyone who started riding during lockdown will know the positive impact cycling can have on your mental health. But it went deeper for Tom. He found a spiritual home at the local cycling hub, Maison du Velo, where they could not do enough to bring him into the local cycling community.
Back in 2016, Neil contacted Team Novo Nordisk – a pro cycling squad of type 1 riders who are sponsored by the world’s largest manufacturer of insulin. The team’s mission is to inspire, educate and empower people with diabetes, just like Tom Kelsall. Tom met Phil Southerland, the former professional cyclist who founded the team, and Southerland immediately saw himself in Tom: “What it was like to be 14 years old, have ambition and have almost everyone doubt you. Diabetes is challenging enough on its own, so to see him overcome both diabetes and his condition is proof that anything is possible. I saw a spark in his eyes that was inspiring. I challenged him to ride London’s Box Hill once, and he went and did it five times.”
“For Phil” Tom says simply.
Tom kept riding and kept improving, completing his first century ride aged 15. A strong bond developed between Tom, Phil and Sam Brand, a pro on Team Novo Nordisk. When the Manxman rode the Commonwealth Games in 2018, he had Tom’s name painted on his shoes.
Tom turned 16 in April amid the first lockdown. “It dawned on me that there might be an opportunity to give him a birthday to remember,” says Neil, who organised a virtual birthday ride, with Brand, Southerland, Francis Cade and Alex Dowsett all in attendance. For a young man at risk of losing connection and slipping through the cracks into isolation, seeing the faces of his cycling family as he hopped on to his indoor bike was confusing then massively exciting.
“It was a complete surprise. When I saw Phil on Zwift I couldn’t understand what he was doing there. Then I saw Francis, Chris, Sam and Phil on Zoom and I was really excited. It was the best birthday present ever,” Tom says. The group tackled a virtual route that let them climb and sprint as if they were out on the road together, connected by CGI scenery and very real power outputs.
While Tom pedalled eyeballs out for the line, Southerland couldn’t help but be impressed. And that’s what landed Tom the ultimate prize – an invitation to Team Novo Nordisk’s talent ID camp. The team has run the camp for the last eight years as a recruitment tool for their squad. Tom joined 65 other young athletes from 25 different countries, all of whom have type 1 diabetes, at the virtual camp.
For a young man struggling to communicate through the isolation of lockdown, the camp was a lifeline and he grabbed it, training hard, getting fit and shattering personal best after personal best in the lead-up to the event. “He continued to raise his own bar day after day during camp,” Southerland says. “I saw Tom morph into a champion who finally truly believed in himself.” Neil’s heart almost burst with pride at his son’s virtual exploits.
Tom attended every presentation, diligently kept his blood glucose blog and smashed his way through every workout, posting power numbers that would make elite amateurs proud. Then came the infamous ramp test, in which riders push themselves to their aerobic limits as the watts ramp up until their lungs feel like bursting. With Sam Brand on a video call, urging him to “give me one more minute … keep going to the top step”, Tom pushed on relentlessly to the very top step. “It blew me away just how much true grit this young man possesses,” Southerland says admiringly.
“It was a life-changing experience for Tom,” says his dad. “He finally found the inclusion from mainstream sport that had been taken away from him by junior football, and he proved to himself and the world that he is an equal.” For Southerland, Tom is the ethos of the team. “We are here to inspire kids to dream big and help them achieve those dreams,” he says.
Tom now has another goal: winning a gold medal at the Special Olympics. “I can’t wait to see how many people Tom can inspire along the way,” Southerland says. Tom is already training hard, going out on club runs with his local Special Olympics group in his Team Novo Nordisk kit. The pathway to the Berlin 2023 Special Olympics is open if Tom continues to ride with the power, spirit and joy that has brought him this far.