'Wonder drug completely changed my life': Shrewsbury cystic fibrosis patient prepares to take on London Marathon to help fund research for cure

Tom Dyas, aged 29, was in and out of hospital as a boy with cystic fibrosis (CF), a life-limiting genetic disease that affects more than 10,000 people in the UK. 

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It makes breathing a daily battle, and treatment is complex and relentless.

Tom spent his childhood having to be hooked up to an intravenous (IV) drip with antibiotics three times a day.

He regularly had to miss school, and his parents were steeling themselves for the possibility he might not live long past 10.

However, advancements in medicine in recent years have meant Tom, a Transport for Wales worker and keen amateur footballer, has recently been able to start living life to the full - including undertaking the marathon on Sunday, April 26. 

• To support Tom’s fundraising for the Cystic Fibrosis Trust, you can donate here: 2026tcslondonmarathon.enthuse.com/pf/tom-dyas

Tom has been taking a drug called Kaftrio since October 2020, a highly effective modular treatment which dramatically improves lung function in CF patients. 

“2020 was the real game changer for me,” he said. “Ever since I’ve had it, my life has been completely different.

“Even running a 5K was out of the question, let alone a marathon.

“The first two weeks of having the drug, it was hell. I was so unwell. It really knocked me about. But I was told to keep persisting with it.

“The improvement in lung function has been remarkable. I’ve gone from 60 per cent capacity to sometimes hitting 99 per cent.

“It’s allowed me to do so much more. 

“I’ve always wanted to run a marathon, so to do London I feel quite lucky.

“The work that they [The Cystic Fibrosis Trust] have done to get me where I am, it’s the least I could do to raise money for them.”

Tom was diagnosed with CF at the age of three and a half. His mum Bev and dad Jim had been concerned that he seemed poorly often, but his GP did not spot anything wrong.

It was only by chance after he fell off his bike that the illness was diagnosed.

Jim took Tom to hospital so medics could fix his teeth, but an anaesthetist spotted that there may be an issue with his lungs, so refused to do the operation and said to return to the GP.

Eventually, Tom was diagnosed with CF, and there started a long and difficult road of many hospital appointments, missed school days, stress and worry.

Jim said: “The outlook wasn’t good. They [medics] didn’t anticipate he’d have a long life, and just said keep him as healthy as you can.”

Historically, CF was a fatal childhood disease, with only about 50 per cent of those diagnosed surviving into adulthood before the 1980s.

But considerable advancements have been made in medical science in recent years.

“The future is looking a lot brighter than it was previously,” added Jim.

Tom is a well-respected goalkeeper in amateur football circles in Shrewsbury, playing between the posts for Mereside Rangers in the Salop Leisure League division one.

Football has always been an important part of Tom's life, but in his youth and early adulthood even playing in goal rather than outfield would take a serious toll on his body.

“I would always be finishing football with headaches and being completely wiped out for the rest of the day,” he said.

And it hasn’t been an easy ride in adulthood for Tom either. Holding down a full-time job was impossible for many years due to the extreme fatigue that comes with having CF.

But thanks to Kaftrio, creons to help with digesting food, and another drug called tobramycin - a powerful antibiotic in powder form which helped improve things for Tom aged 16 to 19 - he is now living his life on his terms.

He is working full time, playing lots of football, regularly in the gym and training for the marathon. It also means he can make the most of his time with friends, family and girlfriend Lily.

However, despite Tom’s future looking bright thanks to the drugs, what works for him does not work for all people with CF.

Research continues to find ways to improve things for patients with different mutations to Tom’s.

That’s why he is running the marathon to raise money for the Cystic Fibrosis Trust, to try and help give others a chance like he has been given.

Tom will be supported in London by Lily, Bev, Jim, sisters Becky and Sarah, their husbands Simon and James, as well as Tom’s nieces, Olivia, Eleanor, Poppy and Phoebe.

The family have taken part in several CF fundraisers over the years, including bake sales and walks at Attingham Park.

His sister Sarah has also done a bike ride from London to Paris for the charity.

Tom added: “Every donation brings us closer to better treatments, a higher quality of life, and, one day, a cure.

“Whether you give £10 or £50, every step I take will be powered by your kindness. Please donate if you can, and share my journey as much as possible.”