A Bath father has completed an extraordinary challenge of running from Bath to Land’s End, covering over 250 miles in just nine days, to raise awareness and funds for the rare condition affecting his young son.
Tom Giles, 34, ran nine consecutive ultra-marathons between June 27 and July 5 to support a charity focused on researching Phelan McDermid Syndrome (PMS), a condition his four-year-old son Jenson lives with.
The route saw him travel through key points including Glastonbury, Exeter, Falmouth, and finally, Land’s End as part of the "Man v Coast" event.
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Giles told GB News: "This was the hardest thing I’ve ever done. The adrenaline on the first few days was insane, but it wasn’t until day four that I truly struggled.
"I woke up alone, my ankle swollen from a tweak the day before, and realised I wasn’t even halfway yet. That was a really tough mental moment – I honestly questioned whether I could keep going.”
Despite only having completed one marathon before this summer, Giles clocked well over the traditional 26.2 miles each day, sometimes running 31 miles, turning the original marathon-a-day goal into nine ultra-marathons.
Running for his son Jenson, who was diagnosed with Phelan McDermid Syndrome and Ring 22, a rare chromosomal disorder combination affecting only around 200 people worldwide.
PMS can cause global developmental delays, intellectual disabilities, and speech impairments, while Ring 22 carries a risk of developing tumours associated with NF2 (neurofibromatosis type 2).
Giles said: "Jenson is the most loving and handsome boy. He lights up every room.
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Tom Giles completed an extraordinary challenge of running from Bath to Land’s End
|Tom Giles
"But he’s faced more in his four years than many do in a lifetime – hundreds of hospital appointments, therapies, and challenges just to do the things most of us take for granted like walking or talking.”
Jenson spent the early weeks of his life in paediatric intensive care after collapsing at just two days old.
The family endured that trauma during the peak of the pandemic – only one parent allowed at his side.
After months of uncertainty and developmental delays, genetic tests revealed the dual diagnosis.
The Briton set out with three main goals for the challenge: raise funds for CureSHANK, raise awareness of PMS, and educate others about rare conditions.
Giles said: "We massively exceeded our fundraising target, which was incredible. But the awareness was just as important.
Tom Giles covered over 250 miles in just nine days
|Tom Giles
"I wanted to educate our friends, our community, and social media followers about these incredibly rare disorders. Most people haven’t heard of Phelan McDermid Syndrome or Ring 22, but they need to."
CureSHANK is currently supporting promising gene therapy research, including a clinical trial (JAG201) that aims to restore the missing SHANK3 gene, which plays a vital role in brain development and is absent in people with PMS.
Giles said: "I hope our story helps accelerate research. There are real scientists working right now on life-changing treatments, and donations make a tangible difference."
Friends, family and members of the community joined him on various legs of the route, offering moral support.
His children were also involved, with his school-age daughter running alongside him for the final stretch of some days.
He told the People's Channel: "My daughter got time off school for it – we wrote to the headmaster and explained what we were doing.
His school-age daughter was running alongside him for the final stretch on some days
|Tom Giles
"She finished a few of the runs with me, and we’ve got videos of our two-year-old crossing the finish line with me. It was very emotional."
Giles said: "I’d love to do something again in 2027. In the meantime, my wife and I might do a few smaller challenges – a couple of marathons to raise awareness, probably without asking for money. This isn’t the end.”
Looking back on the experience, Giles described it as “emotional, rewarding, and purposeful.”
The father of three added: “This was never just about running. It was about giving my son a voice, giving families like ours hope, and doing something meaningful in the face of something incredibly difficult. I couldn’t be prouder of Jenson, of our family, and of the people who supported us."
The family raised £24,350, smashing their target of £15,000.
Click here to learn more about Phelan McDermid Syndrome or to donate.