Jason Bowen's Diagnosis and Symptoms
A former Wales footballer diagnosed with motor neurone disease (MND) five years ago has reported that the symptoms of his degenerative condition are "gradually getting worse."
Jason Bowen, a father of three in his early fifties, described losing the use of his legs, arms, and voice as the disease progresses.
There is currently no cure for MND, a debilitating and typically life-shortening illness that affects the brain and nerves.
His wife, Hayley, who serves as his primary carer, stated they are taking "each day as it comes," adding,
"You can't think too far in advance."
Jason, who earned two caps for Wales, began his professional football career at Swansea City before playing for Cardiff City and Birmingham City.
He retired from football in 2013 at the age of 40 and embarked on a new career as a railway engineer.
Five years prior, he noticed weakness in his left hand and muscle twitching in his left arm.
Encouraged by Hayley, Jason sought medical advice and was diagnosed with MND within weeks.
Progression of the Disease and Impact on Daily Life
MND causes progressive muscle weakness and is usually life-shortening, though treatments can help manage symptoms, according to the NHS.
Jason was first publicly known to have the diagnosis three years ago when he attended the Morrello Clinic in Newport, a rehabilitation centre for neurological conditions.
At that time, exercises at the clinic helped him manage symptoms, but since then his condition has advanced.
Jason explained,
"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."
"Some things are gradually getting worse. Walking. Eating."
He added that he had to stop attending the Morrello Clinic due to fatigue,
"I was finding it too tough. I was getting really tired."
Support from Football Clubs and Community
In 2024, Cardiff City and Swansea City, usually fierce rivals, united to raise awareness and funds for Jason and his family.
Both teams warmed up wearing t-shirts featuring Jason's image, and Swansea City's Former Players' Association donated £1,000.
Jason expressed gratitude for the support, saying,
"The clubs have been amazing, they always are. Asking me to go to games,"
but noted the difficulty he faces with mobility,
"But I'm finding it a bit too tough with the stairs. So I can't do that anymore."
Family Support and Emotional Impact
Jason becomes emotional when discussing the support from his family. Alongside his wife Hayley, he has three sons.
One son, Sam, has followed in Jason's football footsteps, having played for Cardiff City and Newport County, and is currently with Gateshead.
Jason said,
"My boys have been great,"
"It's tough for me to talk about (Hayley). Without her, I wouldn't be able to do anything, really."
Hayley's Personal Connection to MND
Hayley is intimately familiar with MND, as her mother Beryl died from the disease.
She described both diagnoses as,
"just so heartbreaking."
Hayley recalled,
"It was just horrific for me,"
"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."
She noted that Jason's progression has been slower,
"Thankfully Jason's has been slow progressing. We're into our fifth year next month."
Advances in Diagnosis and Care
Despite the absence of a cure, Hayley highlighted improvements in diagnosis and care since her mother's passing two decades ago.
She explained,
"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,"
"The care [now] is totally different, there wasn't a lot of care for my mum,"
"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."
Challenges of Caregiving
Providing personal care for Jason takes a physical and emotional toll on Hayley.
She shared,
"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,"
"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."
Fundraising and Hope for the Future
Jason and Hayley have followed fundraising efforts connected to other sports figures diagnosed with MND.
Last year, a £6.8m specialist centre to support MND patients and their families opened in Leeds, funded in part by a campaign led by Kevin Sinfield, friend and teammate of Leeds Rhinos rugby player Rob Burrow, who died from the condition in 2024.
Hayley commented,
"There's so many people fundraising and doing amazing, amazing things,"
Jason remains cautiously optimistic, stating,
"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."
Support Resources
If you have been affected by the issues raised in this story, organisations offering help and support are available on the BBC's Action Line.
