Hero dad runs 9 ultra-marathons in a row for son’s rare genetic disease

A hero father hailing from Bath, England has recently completed a daunting challenge of running from Bath to Land’s End over 250 miles in just 9 days for a noble cause.

Tom Giles, 34, took this challenge to raise awareness and funds for the genetic rare condition called Phelan McDermid Syndrome (PMS) severely affecting his four-year-old son Jenson.

His consecutive ultra-marathons were also meant to support a charity focused on researching this rare genetic disease.

The key routes that he covered as part of the “Man v Coast” event include Glastonbury, Exeter, Falmouth, and finally Land’s End.

The family raised £24,350, smashing their target of £15,000 through their efforts.

Giles told GB News: “This was the hardest thing I have 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 realized I was not even halfway yet. That was a really tough mental moment, I honestly questioned whether I could keep going,” he added.

Although Giles had only completed one marathon before this summer, he ran more than the traditional 26.2 miles each day, turning his goal into 9 ultra-marathons.

His son was the inspiration behind this daunting task who was diagnosed with Ring 22 and PMS, a rare chromosomal disorder combination affecting only 200 people globally.

PMS can cause the delay in growth and cognitive abilities, speech impairment and Ring 22 can develop tumours associated with neurofibromatosis type 2.

While talking about raising awareness, he said, “I wanted to educate our friends, our community, and social media followers about these rare disorders as most people have not heard of PMS or Ring 22, but they need to.”

CureSHANK is currently supporting groundbreaking and promising gene therapy research, including a clinical trial (JAG201) aiming to restore missing SHANK3 gene. The gene is important for brain development and is missing in people with PMS.