Later this month, Tom Staniford will begin a series of operations to have both of his legs amputated. The surgeons will start with his right leg, removing it below the knee, before allowing him days to recover, and returning for the left one. It’s a procedure that Staniford, an avid cyclist, voluntarily asked for – he even had to persuade some medical staff it is the right thing to do.
“There are a lot of doctors who are like, ‘This is a pretty insane thing’,” he laughs. “There are no refunds for that type of surgery.”
Staniford, a 35-year-old marketing consultant based in Devon, has a rare genetic condition called MDP Syndrome, which affects only around 20 people worldwide.
Among other symptoms, the condition means that his body is unable to store fat beneath the skin, resulting in the ligaments and tendons in his legs becoming very tight.
“Over the years, it has caused a great deal of pain,” he tells Cycling Weekly. The bones in his legs, he goes on to explain, have now “warped together”, with the density dropping so low they are “starting to crumble”. The risk of a life-threatening infection is high.
“It's a whole mess, basically,” he says. But it hasn't stopped him from riding his bike.
Competing in the para-cycling categories, Staniford previously represented Great Britain, and won a national title in 2011. On Sunday, together with around 50 people who came to support, he took his legs on a “symbolic” final bike ride outdoors – a jaunt he dubbed his ‘Goodbye Legs Ride’.
“It was very peaceful and quiet. I wouldn’t go as far as to say it was spiritual – that’s a bit of a wishy-washy nonsense,” he says. “We were riding for riding’s sake, and just enjoying the simple act of cycling, with absolutely no intensity whatsoever. It was a 6mph average or something. We just stopped and smelled the daisies.”
Alongside the ride, Staniford has been raising money for four charities, including the Devon Air Ambulance Trust. His first surgery falls serendipitously around the 20th anniversary of the day he was airlifted to hospital, then a teenager, having crashed head-on with a car while cycling in the Devon lanes.
“I went through the windscreen and then rolled off down the road in a very bad shape,” he remembers. “I arrested twice during the flight – my heart stopped completely twice. I was effectively dead.
“They always joke that the good die young, and I should know, because I’ve done it twice,” he adds with a chuckle.
Already, the 35-year-old has met his fundraising goal of £10,000 – a number he says he “pulled out of the air”. He hopes that people will continue to donate, and has left his JustGiving page open until the end of May.
“People are like, ‘Oh, you’re so inspiring. How do you do this?’ But at the end of the day, it comes down to something very simple: I like riding my bike. That’s the only reason I do it,” he says.
“I didn’t do this to be inspiring. Quite selfishly, I’m doing it so I can get new legs. It seemed like a good thing to try and make some money as a side effect of that.”
The date of Staniford's first surgery is set for 21 May. Given his condition, he is unsure how well his body will heal from the procedures, but he has no intention to stop riding his bike afterwards.
“Cycling has been my saving grace,” he says, recalling the hours he has spent indoors on his Trek road bike, and outdoors on his Brompton. “It's enabled me to keep the blood going, the nerves going, and use all the muscles which I otherwise wouldn't because of the pain.
“I’ve made my peace with cycling if I am unable to do very much of it after the operations… In the best case scenario, I take to prosthetics, and I can push down really hard on the pedals, train properly, recover quickly, and hopefully get back to racing.
“If I can’t use my legs at all, there’s always hand cycles,” he adds with a smile.
Donations to Staniford’s JustGiving campaign are open until the end of May. As well as the Devon Air Ambulance Trust, funds will go towards the Wheels for Wellbeing charity, and two literary projects: the Exeter UNESCO City of Literature and the Devon and Exeter Institution.
