Former international footballer's MND is 'gradually getting worse'

A former Wales footballer who was diagnosed with motor neurone disease (MND) five years ago says the symptoms of his degenerative disease are "gradually getting worse".

Jason Bowen, a father-of-three who is now in his early fifties, said he was losing the use of his legs, arms and voice.

There is currently no cure for MND, a debilitating and usually life-shortening condition that affects the brain and nerves.

His wife, Hayley, who is now her husband's primary carer, said they were taking "each day as it comes", adding: "You can't think too far in advance."

Jason, who was twice capped for Wales, began his career at Swansea City before going on to play for Cardiff City and Birmingham City.

He hung up his boots in 2013, aged 40, and started a new career as a railway engineer.

But five years ago he began to notice weakness in his left hand as well as muscle twitching in his left arm.

Hayley urged Jason to go to the doctor and within a matter of weeks he had been diagnosed with MND.

The condition causes muscle weakness that gets worse over time. It is usually life-shortening but treatment can help to manage the symptoms, according to the NHS.

I first met Jason three years ago, shortly after he had made his diagnosis public.

At the time, he was attending the Morrello Clinic in Newport, a rehabilitation centre for people with neurological conditions.

Back then, the exercises he did there were helping him to keep on top of his symptoms. But those symptoms have progressed.

"I'm losing the use of my legs and my right arm is getting a bit weaker. My voice. I can't use my left arm at all," said Jason.

"Some things are gradually getting worse. Walking. Eating.

"I've had to stop (attending Morrello) because I was finding it too tough. I was getting really tired."

In 2024, two of Jason's former clubs - Cardiff and Swansea, ordinarily bitter rivals - united to raise awareness and funds for Jason and his family.

The two teams warmed up in t-shirts bearing Jasons's image, with Swansea City's Former Players' Association donating £1,000.

"The clubs have been amazing, they always are. Asking me to go to games," said Jason.

"But I'm finding it a bit too tough with the stairs. So I can't do that anymore."

It's when he discusses the support he receives from his family that Jason becomes emotional.

As well as his wife Hayley, Jason has three sons.

One, Sam, followed in Jason's footballing footsteps and played for Cardiff City and Newport County. He is currently on the books with Gateshead.

"My boys have been great," said Jason.

"It's tough for me to talk about (Hayley). Without her, I wouldn't be able to do anything, really."

As for Hayley, MND is a condition that she is painfully familiar with, after her mum Beryl died from it.

She describes both Jason and her mother's diagnoses as "just so heartbreaking".

"It was just horrific for me," said Hayley.

"My mum only lasted two years with it. Her [disease] was fast progressing which attacked her mid-waist to her head, so it was really, really awful.

"Thankfully Jason's has been slow progressing. We're into our fifth year next month."

Although there remains no cure for MND, Hayley said there had been progress in its diagnosis and care in the two decades since Beryl's death.

"My mum took two years to be diagnosed. Jason took weeks, so we knew what we were dealing with early on, which I think was easier," she said.

"The care [now] is totally different, there wasn't a lot of care for my mum," she added.

"There was one MND nurse throughout the whole of Wales, while Jason has a team of people with the NHS, and if I need anything I just have to pick up the phone or send an email and it's sorted within a day or a couple of weeks."

The personal care Hayley provides for Jason does take its toll. As well as physically supporting her husband, there's the emotional impact, too.

"I spend a lot of time crying in the car. But we tend to just take each day as it comes. You can't think too far in advance," she said.

"As long as I'm fine, it rubs off on him. So if I'm having a bad day I'll see it will affect him.

"If I try to keep myself more upbeat, and go in there with a smile in the mornings when I'm getting him up, he's like that."

Jason and Hayley have been following the fundraising efforts of those connected to other sportspeople diagnosed with MND.

A £6.8m specialist centre to support MND patients and their families opened in Leeds last year - funds to build it were helped by a campaign led by Kevin Sinfield, friend and teammate of Leeds Rhinos rugby player Rob Burrow, who died with the condition in 2024.

"There's so many people fundraising and doing amazing, amazing things," said Hayley.

As for Jason, he remains cautiously optimistic about the future.

"There's lots of people doing lots of fundraising for MND, and maybe they can get a cure.

"We've just got to keep going and focus on raising as much money as we can."

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