Tom Staniford took a deep breath before he lifted the hospital bed sheet. He felt groggy from the anaesthetic, his body was pumped with morphine, and though he had only just woken up from surgery, he needed to know how it had gone. Removing a leg isn’t an everyday procedure. Given Staniford’s rare condition, it was also a risky one; one hospital refused to do it for him. Did these surgeons get it right?
“There’s an element of shock,” Staniford says, remembering his first glimpse. “Psychologically, you’re balancing two competing sentiments; first of all, you’re thinking, ‘I’ve lost a leg’, and so there’s almost a sensation of grief. And at the same time, you’re thinking, ‘I’ve been given this new opportunity for a potentially much, much better quality of life.’ Certainly in my case, my walking and feet were basically pretty shit before.”
A former British para-cycling champion, Staniford has a genetic condition called MDP syndrome, which stops his body storing fat beneath the skin, and is thought to affect only around 20 people worldwide. The conditions had made the ligaments and tendons in his legs unbearably tight. The bones had warped together. His feet, which had no fat on the soles, had deteriorated so much they were prone to infection.
Doctors warned Staniford his body may not heal properly from amputations. “There are no refunds,” they told him – he couldn’t change his mind afterwards. But Staniford, who had spent much of the last three years in a wheelchair, insisted. He even said beforehand: “I’ve made my peace with cycling if I am unable to do very much of it.”
What is MDP syndrome?
MDP syndrome (mandibular dysplasia with deafness and progeroid features) is among the rarest genetic conditions in the world, affecting around one in 415 million people.
It is caused by a single gene mutation and prevents fatty tissue being stored under the skin.
Research on the condition is limited – it was first described in a study in 2010 – but it is not known to impact life expectancy.
The first amputation, for the right leg, came on 21 May 2025. As he sat in his hospital bed afterwards and stared down at the flesh rounded off below his knee, an unexpected feeling caught him off guard. “Not being funny, but it’s slightly comical,” the 37-year-old begins to smirk, “because you’re thinking, ‘He’s kind of cute, isn’t he?’ He’s just that little funky bit under the knee, and you’re waving your knee around, and it feels weird because obviously you’ve lost all this weight on the end of your foot. It’s a very disorientating and confusing time.
“But I was fortunate in that everything went to plan,” he continues. “The residual feeling for me was very much one of optimism and thinking, ‘Right, let’s heal up fast and get cracking.’”
Staniford returned five months later to have the same surgery on his left leg, an experience he says was “a bit of an anticlimax because I’d done it before”. His attention then turned to the questions hanging over his recovery: how would the wounds heal? Would he take to prosthetics? And, perhaps most importantly to him as a lifelong cyclist, might he one day be able to return to racing?
Staniford is speaking to me over video call from his kitchen table in Exeter. Our last interview was in early May 2025, days after his ‘Goodbye Legs Ride’, a symbolic bike ride attended by around 50 people, who came to support and cycle with him as he turned his final pedal strokes with his own legs. The day raised £16,000 for four charities. Three weeks later, Staniford went in for his first surgery.
“The tricky thing is that they’d not done amputations with somebody with my very rare genetic medical condition,” he says. A plastic surgeon waited on standby, ready to perform an emergency skin graft if needed. As it turned out, Staniford’s years of cycling had given him “very high quality” calf muscles. “They were able to basically do just a straightforward, textbook, below-knee amputation on both occasions, which was fantastic,” he says.
It might seem strange, but Staniford’s first move was to give each of his residual limbs a nickname. “It’s a bit of a psychological trick,” he explains. “When you name something, you humanise it, and then it becomes a lot easier to relate to.” He called the right one Trevor, after the patient who had occupied his hospital bed before him and whose name was still on the whiteboard, and the left one Roger, because his friend likened the shape to the Star Wars droids that repeat, ‘Roger, Roger’.
He then had to wait seven months after the second surgery, until May this year, to get both of his prosthetics and begin learning to walk again. “That was ground zero,” he says.
One small step
At firt, Staniford eased himself in with little steps, holding onto bars in the hospital. Then came more confident strides, and an ambitious idea: why not do a Parkrun? He figured the NHS offers a nine-week ‘Couch to 5K’ plan for all abilities to complete the distance. Why not him?
Staniford dubbed his project ‘Ouch to 5k’, circled nine weeks on his calendar – 11 July – and emailed the organisers of his local event, just to make sure it wouldn’t be a bother if he took a while to finish. They put him in touch with the day’s ‘tail walker’, the volunteer tasked with following behind the last-placed participant, who was delighted to help.
Staniford’s ‘Goodbye Legs Ride’ drew a crowd.
(Image credit: Tom Staniford)
The day of the Parkrun ended up being one of the hottest of the month. Temperatures rose towards the low 30s, and Staniford, wearing “three layers of basically wetsuit material” that wrapped his legs to the prosthetics, quickly knew he would have to take it easy. With stops to curb the sweating, he finished the 5km in an hour and 41 minutes – a vast improvement on the hour and 28 minutes it took him to do 2km barely two months before. His accompanying tail walker, Rob, later wrote on LinkedIn that he found day “inspirational”.
Staniford smiles at the memory. “It’s the longest I’d walked in an unbroken session in many, many, many years,” he says. “I think probably the last time I ever walked three miles in one go was back in maybe 2000 or 2001.”
Cycling, though, remained Staniford’s ultimate goal. It wasn’t long after he got his prosthetics that he returned to the Trek road bike bolted to the turbo trainer in his garage. His shoe size had increased from a six to a nine, and he was shocked to find his saddle three inches too high. His new legs, it transpired, were shorter than his old ones. “Height theft!” he laughs.
Unbeknown to Staniford, leg amputees are often given shorter prosthetics at first because a lower centre of gravity can help adapt to balancing – otherwise, it can feel like walking in stilts. “Nobody told me that,” Staniford says. He fired off a stern email to his consultants, and by July, the three inches – and his bike fit – were restored.
Outdoor riding at last
It was around that time, too, that Staniford took delivery of an electric folding bike from Brompton. It ended up being a game-changer. “I’d lost a huge amount of muscle mass, and the contact between my leg and the prosthetic was still shaky,” Staniford says. “I could use the electric assist to modify how much effort I was actually putting through my legs and ensure that I could keep a reasonable pace without falling off.”
The Brompton helped widen Staniford’s cycling horizons beyond his garage and out into the lanes. Again, sensing his fast progress, he set himself another target: 12 September, the date of a new sportive run by Devon Air Ambulance, the charity that airlifted him to hospital when he crashed head-on with a car while cycling as a teenager.
Staniford chose the 30-mile route, rather than the 50 or 100. “I probably could have scraped through the 50-miler,” he says, “but I wanted it to be a friendly, happy, sociable event, where at the end of it I could smile and chat to people, rather than finishing in a body bag and having to be carted off to the crematorium.”
His recovery to get to that point had been remarkable. The ride took place not even a year after Staniford’s second amputation, four months since he started using prosthetics, and it went without a hitch. He remembers the “very warm” support he felt at the event, even if he didn’t have many conversations with other riders. “A lot of people are a bit iffy about disability,” he says. “Obviously with amputations, people don’t want to say something unexpectedly offensive, and so unfortunately they just don’t bother saying anything, which is understandable.
“But, you know, amputees, we don’t bite. As long as your questions are polite and respectful, most of us are very happy to chat about our situation.”
(Image credit: Tom Staniford)
Sportive ticked off, Staniford’s mind shifted to racing. What would it take to get back to his pomp? That came in the early 2010s, when he competed on the track and road, winning the 2011 British Para-cycling Circuit Race Championships, held in a leafy suburb of London.
In recent years, however, the pain in his legs and feet had become so severe that simply riding, let alone racing, had become a challenge. But those days were now gone. Thanks to his lightweight prosthetics – “4.6kg [for the pair], I actually weighed them” – he could start gearing himself towards a racing return.
One hurdle was clipless pedals. “Most of the Cycling Weekly readership will be well aware of how difficult it is to clip in and unclip when you first get clipless pedals,” Staniford says. “Those issues are massively, massively increased by the fact that obviously I have no foot or ankle… It’s borderline impossible.”
He had heard on the para-cycling grapevine about a company called MagPed that made magnetic pedals, so he acquired a set, and started using them on the turbo. “They feel exactly like normal clipless pedals. They’re brilliant,” he says.
Staniford felt the same about the moisture-wicking prosthetic leg socks he got from Ethnocare. Previously, he had had to stop every 10-15 minutes to manage his sweat build-up. The socks stretched that time out to 90 minutes. “They use some sort of space-age material, and I’m pretty sure some type of witchcraft as well,” Staniford says.
Time trial goals
These days, Staniford trains up to nine hours a week, splitting his time mostly between the gym and the turbo trainer. He’s also braving the autumn cold on the roads. For one of his latest jaunts, completed days after our interview, he wore eight layers on his legs. It took an hour to get dressed.
What motivates him? “The big carrot of competition,” Staniford says. The next step is to start putting his name down to race, and he’s got his eye on time trials. “It doesn’t need to be a para-cycling TT event. Any open TT is absolutely fine, and so that obviously opens things up and makes it more flexible to select a calendar,” he says.
“Hopefully I’ll be fast enough to catch British Cycling’s eye, and then hopefully I’ll be able to do some TTs for them internationally.”
It’s a possibility that once seemed a long shot to the man who had “made peace” with the idea he may never cycle again. The reality is, though, that it’s not in Staniford’s nature to pity himself; he makes the best of the cards he has been dealt, and plays them on his terms. Remember: the amputations were his idea. Is there any part of him that regrets them now?
“I’m still in the period whereby I have no regrets whatsoever,” he says, unflinching. “The brutal truth is that my physical condition before with my feet was truly quite shit. Although there are days when you think, ‘Well, this is quite a ball ache, actually,’ and it’s a bit stressful and hard, being a prosthetic user and an amputee is still an improvement on what I had before, and so I am very grateful, and I have no regrets.”
The doctors once warned Staniford there would be no refunds for his surgeries. With the privilege of hindsight, he’s more likely to leave them a tip.
Tom Staniford is currently working on a documentary about his life with filmmaker Joe Norledge. They are hoping to release it to film festivals in 2027. You can follow Staniford’s progress on his Instagram account (@tomstaniford) and his Substack blog.
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