Jason Bowen | It is a tough time for my family and I, but we are grateful for the support we have received
Jason Bowen played in a number of south Wales derbies as a player, representing the white and black and blue sides of the Swansea City v Cardiff City rivalry, but walking out at the Swansea.com Stadium on Saturday will be a particularly special and emotional moment.
Bowen and his family will be in attendance for the latest edition of the 112-year rivalry between the Swans and the Bluebirds as he seeks to raise awareness of Motor Neurone Disease (MND) following his diagnosis with the illness, which currently has no cure, and to raise valuable funds to help with his ongoing care and treatment.
The two teams will warm-up in t-shirts bearing Bowen’s image and advice on how supporters can donate to help him and his family, while there will also be a bucket collection in the club shop.
Swansea City’s Former Players’ Association also plan to make a donation to the Bowen family, while the club will also auction off an item of memorabilia to raise further funds later in the season.
Supporters wishing to donate to Jason and his family online, can do so here.
The former winger played for the Swans between 1990 and 1995, making over 100 appearances and helping Frank Burrows’ side secure Autoglass Trophy glory against Huddersfield Town at Wembley in April 1994.
He also spent five years in Cardiff colours, suffering a relegation before two promotions saw him help the Ninian Park side climb to the second tier.
In addition, he featured for each club against the other on derby day, and knows all too well how the players will be feeling while he is greeting the crowd.
“It will be a nice moment for my family and I, it will be special, and I am sure a bit emotional,” said Bowen.
“The Swans have had me down there before and treated me and my family really well on a matchday.
“Cardiff City have been good as well with bucket collections for me, Newport have been fantastic and released a kit with MND on the shirt.
“I have had a lot of support from people like Andy Legg, Scott Young, Steven Jenkins, Martyn Margetson, who is with the Swans now, and many more.
“We have had a golf day and black-tie dinner, there is a group of people who try and get some events organised all the time.
“My former clubs and teammates have been brilliant, and to be able to go out on the pitch with both sets of fans and hopefully get a good reception on Saturday will be great.
“I don’t remember too many specifics about the derbies I played in, but they were real fierce occasions back then, and they were very tough games to play in.
“We played at The Vetch and Ninian Park, they were small, tight grounds with the crowd right on top of you, you could hear everything that was said!
“You’d get the big build-up throughout the week, and it is a game you never want to lose. You want the bragging rights.
“Hopefully it will be a good game, and it will help because we just need to raise awareness on MND, all of these events like the matchday Saturday will be really positive for raising awareness and hopefully there will be a cure in the future.
“I just have to keep positive and you never know what could happen, if it doesn’t help me hopefully it does help someone else in the future.”
Former Wales international Bowen, who also played for Birmingham City, Southampton, Reading and Llanelli during his playing career before hanging up his boots in 2013, was first diagnosed with MND three years ago.
He had initially wanted to keep his condition private, but the financial demands of the care and assistance he and his family would need meant he felt there was little option other than to tell friends and former colleagues.
Bowen had been working in the rail industry at the time he was diagnosed, but admits he had little indication of any serious issues when he went to see his doctor after feeling weakness in his left arm.
“I was in work and had done a bit of work on the railway, which is heavy lifting, we had a break in a contract and I had a bit of weakness in my left hand and my muscles were twitching down my left arm,” he recalls.
“My wife Hayley said to go to the doctor and find out what was wrong, she had done research on the internet and thought it was carpal tunnel syndrome.
“I went to the doctor, who checked me over, I went for a brain scan and blood tests, and he sent me for an electromyography (EMG) which probes the muscles and their response.
“My blood tests and brain scan came back fine, but the EMG picked it up, and within six weeks I was diagnosed.
“It was a shock, I was called in and the doctor didn’t want anyone to be with me. He sat me down and said I had Motor Neurone Disease and I was stunned, mainly because I had to tell my wife, whose mother had died from it as well.
“To go back home from the doctors and tell her that I have the exact same disease that her mother had was a shock to the system for her. Telling the kids was also difficult but they can see how I am, and that I’m keeping myself healthy and focused, I’m still laughing and joking with the family and still doing what I am able to do.
“It was a shock for my mum and dad as well, my brother and everyone surrounding us, they never thought that it would come to this, but you just have to stay as positive as you can.
“Mentally I am good, come April it will be three years since I was diagnosed, and it's been slow progressing since then.
“I have lost the use of my left hand and arm, but other than that I am not too bad, I have a little weakness in my right hand but treatment is going well.
“I am trying to keep as fit as I possibly can, so I’m having physio twice a week just to maintain my muscle health to stay as strong as I can for as long as I can.
“I am doing hydrotherapy once a week too, so I’m just trying to maintain strength and fitness.
“That routine does help. It is sort of like being back in training again. It helps me mentally as well as physically, because I have a plan in place and it just keeps me busy and keeps me focused on things.”
Bowen has also been receiving a course of the drug Proleukin – a low dose form of Interleukin-2 - which clinical trials have shown can slow and reduce the progressions of Motor Neurone Disease.
The results of a trial of the drug were positive and provided hope for those living with the condition, bit it is not available on the NHS and the release of further information from that trial has proved frustratingly slow for patients and their families.
And Bowen acknowledges the cost of the treatment, in addition to the physio and hydrotherapy he regularly undergoes, has been a real challenge for him and his family.
“The physio I do twice a week costs £60 an hour. Thankfully in St Joseph’s Hospital in Malpas, where I take part in the hydrotherapy, they don’t charge me,” he said.
“I have started treatment on a new drug which we found out about called Interleukin-2.
“You can’t get it on the National Health Service, the drug is out there and people cannot get hold of it unless you pay for it.
“The cost is coming in at about £1,500 every three months, while I also take different supplements every day to try and keep me healthy at all costs.
“The drug has been around for a while, it's been trialled with a few groups.
“People who have used it have seen an improvement when they are on it. All of the work has been done on it, and hopefully it can become more widely available because it could really help a lot of people.”
Bowen hopes his efforts to raise funds and awareness can also provide support for those impacted by MND, and believes the profile of the derby being broadcast live on Sky can be valuable in that cause.
“It’s definitely important to raise the awareness,” he said.
“And hopefully this game being on Sky, as you say, and being a big game can help spread that message.
“My family and I have been fortunate to have great support from so many people in football, and it will mean a lot to us to be there on Saturday.”