Welsh football hero Jason Bowen has spoken for the first time about the heartbreak of telling his family he had been diagnosed with Motor Neurone Disease (MND)
Bowen, 50, has a rare popularity in Welsh football having been capped by his country twice but also having played for Cardiff City, Swansea City and Newport County.
The news of his disease was revealed for the first time earlier this month in a post on the fund-raising website GoFundMe as his family sought help with the cost of his treatment.
MND is a life-shortening illness that attacks the body’s nervous system and interrupts messages between the brain and the body’s muscles. As of today there is no cure.
Jason and his wife Hayley have shared the impact on the whole family of discovering they may only have three more years together.
Jason was diagnosed after feeling weakness and twitching in his left arm. Since then he has lost all strength in his arm, meaning he is struggling to do the basic things like use a knife and fork.
He was alone when he received the news after five weeks of testing.
Jason said: “The doctor just came out and gave it to me straight. He said, ‘look you’ve got Motor Neurone Disease’.
“I asked what the timescale was and he said ‘Three to five years’.
“It was terrible coming home and telling Hayley and the boys what’s happening. But I’m still here I’m still fighting as much as I possibly can and I’ll take it on for as long as I possibly can.”
Jason and Hayley, 49, have been together for more than 30 years and have three boys together; Jaye, 27, Sam, 22, and Theo, 14.
“At first it was just awful, heartbreaking, and really hard to understand,” said Hayley. “To be told that you will lose use of your limbs, your ability to move and eat your own food, it is just horrendous.
“But whenever he needs help, I am by his side.”
Merthyr-born Jason, who made almost 600 appearances in his career, is bringing his professional mindset to his battle.
“I’m just trying to stay as positive as I can. I’m taking care of my health and doing what I can,” he added. “In physio they say, ‘Use it until you lose it’, so that’s what I’m trying to do.”
Despite the family’s positivity and strength and support, they know the reality.
“He has a really strong, determined mindset. He would say ‘I am going to be the one to beat this’ – but I know there is no cure,” said Hayley.
“When I’m having a meltdown day and I do feel down, Jason is amazing. He says, ‘Look I’m fine, I’m going to be fine’ – but I know he’s not.”
This will not be the Bowen family’s first experience of MND.
Eighteen years ago, Jason and Hayley cared for Hayley’s mother Beryl as she battled with MND for two years until she passed at the age of 64.
“I think that’s the really difficult part, we have been hit by something quite rare twice,” said Hayley.
Jason said: “I thought ‘Surely she couldn’t have a double whammy, it couldn’t happen twice to her.’ I was thinking more of Hayley than myself in all honesty.
“I had an inkling, but it was still a shock when the doctor did tell me. Hayley was like, ‘No, no it’s carpal tunnel syndrome,’ so I think she had more of a shock than I did.”
Hayley said: “Losing my mum was heartbreaking. I have never felt anything like that in my life. But when it is your husband it’s on a different level.
“Some nights I just don’t sleep. I’m constantly looking at research, what’s being done, what’s out there, what supplements are there, what drugs there are. I’m just trying to find something.”
However, for Jason, researching MND and looking into the future is often too difficult.
“I don’t want to see what’s coming,” he said. “There is a support network out there, but I don’t want to see people in wheelchairs or people who can’t talk. I don’t want to see that. I want to stay in a positive mindset.”
Hayley said: “We have talked about him dying, his wishes and what care would be in place, but at the moment we try not to think about those dark things and just live each day as it comes.”
For Jason and Hayley, the hardest moment was having to tell their three boys.
Jason said: “Putting it all out there was a little bit scary because with my youngest boy, we kind of watered it all down for him.”
The couple’s youngest son, Theo, was 12 when his father was diagnosed.
Hayley said: “Theo was pretty heartbroken, but we only told Theo what he needed to know. Like today we said, ‘Dad is fine, he is doing really well, and he is still taking you to football.’
“I had to explain to him ‘Everybody dies at some point, but Dad is not dying today’ and that is all I could really focus on. Today. That day.
“He wasn’t born when we were going through things with my Mum, so he hasn’t got that negative experience with the disease. He just sees dad as carrying on as normal.”
Jason and Hayley decided to be more upfront with the older boys, Jaye, 27, and Sam, 22.
“My eldest son, Jaye was 25 when Jason was diagnosed. He really struggled because he is old enough to remember my mum and my middle one, Sam, was exactly the same,” said Hayley.
Jason said: “The boys can see how well I’m doing so I think they aren’t as worried at the minute.
“I think their attitude is, well, ‘Dad’s fine, so you know we should be fine too’.”
Hayley added: “On the day the news broke in the media Jason had a meltdown – he just couldn’t believe so many people wanted to help."
Jason said: “I saw all the support and I see people doing things just to keep me on this earth for as long as I possible.”
It costs approximately £1,200 a month for Jason to have his physio, hydrotherapy and supplements.
“It all just mounts up. But I want to do all these things so I can stay as strong as I can for as long as I can,” said Jason.
More than £13,000 has already been donated to Jason’s GoFundMe page with the family aiming to raise £20,000 to help him and his family for years to come.
“It really has blown me away and I just want to thank everyone from the bottom of my heart,” he said. “It means so much to me and my family so we can keep doing these things to keep me fit and here as long as we can."
Despite Hayley’s mum’s death happening nearly 20 years ago, there remains only one drug available. Riluzole is said to extend the lives of those with MND by two to three months.
However, it can cause negative side effects, which the family saw first-hand through Beryl’s struggle, and Jason doesn’t want to take the drug.
“I just thought, ‘Nah, what’s the point of that towards the end of my life, all that suffering, what’s the point?’ So I refused the drug,” he said.
Instead, Jason has been taking part in an MND trial for the last eight months.
“You just got to keep fighting, keep positive and keep going for as long as you can,” he said.
- You can donate to the Bowen family’s campaign here
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