{"id":75312,"date":"2023-02-24T17:43:04","date_gmt":"2023-02-24T17:43:04","guid":{"rendered":"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/?p=75312"},"modified":"2023-05-29T22:45:43","modified_gmt":"2023-05-29T21:45:43","slug":"welsh-football-hero-jason-bowen-speaks-for-first-time-about-motor-neurone-disease-diagnosis","status":"publish","type":"post","link":"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/2023\/02\/24\/welsh-football-hero-jason-bowen-speaks-for-first-time-about-motor-neurone-disease-diagnosis\/","title":{"rendered":"Welsh football hero Jason Bowen speaks for first time about Motor Neurone Disease\u00a0diagnosis"},"content":{"rendered":"\n<h4 class=\"wp-block-heading\"><strong>The Cardiff City and Swansea City favourite says: \u2018I want to stay as strong as I can for as long as I can\u2019<\/strong><\/h4>\n\n\n\n<ul class=\"wp-block-list\">\n<li>&#8216;Hardest part was telling my children&#8217;<\/li>\n\n\n\n<li>&#8216;Overwhelmed by public support&#8217;<\/li>\n\n\n\n<li>&#8216;I was alone when I received terminal diagnosis&#8217; <\/li>\n\n\n\n<li>Wife Hayley&#8217;s mum died from MND<\/li>\n<\/ul>\n\n\n\n<p>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) &nbsp;<\/p>\n\n\n\n<p>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. <\/p>\n\n\n\n<p>The news of his disease was revealed for the first time earlier this month in a post on the fund-raising website <a href=\"https:\/\/www.gofundme.com\/f\/jason-bowens-motor-neurone-disease-treatment\">GoFundMe<\/a> as his family sought help with the cost of his treatment.<\/p>\n\n\n\n<p>MND is a life-shortening illness that attacks the body\u2019s nervous system and interrupts messages between the brain and the body\u2019s muscles. As of today there is no cure. <\/p>\n\n\n\n<p>Jason and his wife Hayley have shared the impact on the whole family of discovering they may only have three more years together.     <\/p>\n\n\n\n<p>Jason was diagnosed after feeling weakness and twitching in his&nbsp;left&nbsp;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.&nbsp;<\/p>\n\n\n\n<p>He was alone when he received the news after five weeks of testing.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Jason said: \u201cThe doctor just came out and gave it to me straight. He said, \u2018look you\u2019ve got Motor Neurone Disease&#8217;.<\/p>\n\n\n\n<p>&#8220;I asked what the timescale was and he said \u2018Three to five years\u2019.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"800\" height=\"600\" loading=\"lazy\" src=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-Theo-Sam-and-Jaye.jpg\" alt=\"\" class=\"wp-image-75329\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-Theo-Sam-and-Jaye.jpg 800w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-Theo-Sam-and-Jaye-300x225.jpg 300w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-Theo-Sam-and-Jaye-770x578.jpg 770w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-Theo-Sam-and-Jaye-293x220.jpg 293w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><noscript><img decoding=\"async\" width=\"800\" height=\"600\" src=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-Theo-Sam-and-Jaye.jpg\" alt=\"\" class=\"wp-image-75329\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-Theo-Sam-and-Jaye.jpg 800w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-Theo-Sam-and-Jaye-300x225.jpg 300w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-Theo-Sam-and-Jaye-770x578.jpg 770w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-Theo-Sam-and-Jaye-293x220.jpg 293w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/><\/noscript><figcaption class=\"wp-element-caption\">Jason and his children. (From left to right: Theo, Jaye, Jason and Sam.) Image: Hayley Bowen<\/figcaption><\/figure>\n\n\n\n<p>\u201cIt was terrible coming home and telling Hayley and the boys what\u2019s happening.&nbsp;<\/p>\n\n\n\n<p>\u201cBut I\u2019m still here I\u2019m still fighting as much as I possibly can and I\u2019ll take it on for as long as I possibly can.\u201d&nbsp;<\/p>\n\n\n\n<p>Jason and Hayley, 49, have been together for more than 30 years and have three boys together; Jaye, 27, Sam, 22, and Theo, 14.<\/p>\n\n\n\n<p>\u201cAt first it was just awful, heart-breaking, and really hard to understand,&#8221; said Hayley.<\/p>\n\n\n\n<p>\u201cTo be told that you will lose use of your limbs, your ability to move and eat your own food, it is just horrendous. &nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cBut whenever he needs help, I am by his side.\u201d&nbsp;<\/p>\n\n\n\n<p>Merthyr-born Jason, who made almost 600 appearances in his career, is bringing his professional mindset to his battle. <\/p>\n\n\n\n<p>\u201cI\u2019m just trying to stay as positive as I can. I\u2019m taking care of my health and doing what I can,&#8221; he said.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cIn physio they say, \u2018Use it until you lose it\u2019 so that\u2019s what I\u2019m trying to do.\u201d&nbsp;&nbsp;<\/p>\n\n\n\n<p>Despite the family&#8217;s positivity and strength and support, they know the reality.   <\/p>\n\n\n\n<p>\u201cHe has a really strong, determined mindset. He would say \u2018I am going to be the one to beat this\u2019 &#8211; but I know there is no cure,&#8221; said Hayley.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cWhen I\u2019m having a meltdown day and I do feel down, Jason is amazing. He says, \u2018Look I\u2019m fine I\u2019m going to be fine\u2019 &#8211; but I know he\u2019s not.\u201d&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>\u2018Hit by something rare twice\u2019&nbsp;<\/strong><\/h2>\n\n\n\n<p>This will not be the Bowen family&#8217;s first experience of MND.<\/p>\n\n\n\n<p>Eighteen years ago, Jason and Hayley cared for Hayley\u2019s mother Beryl as she battled with MND for two years until she passed at the age of 64.&nbsp;<\/p>\n\n\n\n<p>\u201cI think that\u2019s the really difficult part, we have been hit by something quite rare twice,\u201d said Hayley.&nbsp;<\/p>\n\n\n\n<p>Jason said: \u201cI thought \u2018surely she couldn\u2019t have a double whammy, it couldn\u2019t happen twice to her.\u2019 I was thinking more of Hayley than myself in all honesty.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cI had an inkling, but it was still a shock when the doctor did tell me. Hayley was like, \u2018No, no it&#8217;s carpal tunnel syndrome,\u2019 so I think she had more of shock than I did.\u201d&nbsp;<\/p>\n\n\n\n<p>Hayley said: \u201cLosing my mum was heart-breaking. I have never felt anything like that in my life. But when it is your husband it\u2019s on a different level.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cSome nights I just don\u2019t sleep. I\u2019m constantly looking at research, what\u2019s being done, what\u2019s out there, what supplements are there, what drugs there are. I\u2019m just trying to find something.\u201d&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-large is-resized\"><img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-hayley-and-louise-edited.jpg\" alt=\"Jason and Hayley with his mother Louise Bowen. Image: Hayley Bowen\" class=\"wp-image-75342\" width=\"523\" height=\"697\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-hayley-and-louise-edited.jpg 480w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-hayley-and-louise-edited-225x300.jpg 225w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-hayley-and-louise-edited-293x391.jpg 293w\" sizes=\"auto, (max-width: 523px) 100vw, 523px\" \/><noscript><img decoding=\"async\" src=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-hayley-and-louise-edited.jpg\" alt=\"Jason and Hayley with his mother Louise Bowen. Image: Hayley Bowen\" class=\"wp-image-75342\" width=\"523\" height=\"697\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-hayley-and-louise-edited.jpg 480w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-hayley-and-louise-edited-225x300.jpg 225w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/Jason-hayley-and-louise-edited-293x391.jpg 293w\" sizes=\"(max-width: 523px) 100vw, 523px\" \/><\/noscript><figcaption class=\"wp-element-caption\">Jason and Hayley with his mother Louise Bowen. Image: Hayley Bowen<\/figcaption><\/figure>\n\n\n\n<p>However, for Jason, researching MND and looking into the future is often too difficult.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cI don\u2019t want to see what\u2019s coming,&#8221; he said.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cThere is a support network out there, but I don\u2019t want to see people in wheelchairs or people who can\u2019t talk. I don\u2019t want to see that. I want to stay in a positive mindset.\u201d&nbsp;<\/p>\n\n\n\n<p>Hayley said: \u201cWe 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.\u201d&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>The hardest part&nbsp;<\/strong><\/h2>\n\n\n\n<p>For Jason and Hayley, the hardest moment was having to tell their three boys.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Jason said: \u201cPutting it all out there was a little bit scary because with my youngest boy we kind of watered it all down for him.\u201d&nbsp;<\/p>\n\n\n\n<p>The couple\u2019s youngest son Theo was 12 when his father was diagnosed.&nbsp;<\/p>\n\n\n\n<p>Hayley said: \u201cTheo was pretty heartbroken, but we only told Theo what he needed to know. Like today we said, \u2018Dad is fine he is doing really well, and he is still taking you to football.\u2019&nbsp;<\/p>\n\n\n\n<p>\u201cI had to explain to him \u2018Everybody dies at some point, but Dad is not dying today\u2019 and that is all I could really focus on. Today. That day.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cHe wasn\u2019t born when we were going through things with my Mum, so he hasn\u2019t got that negative experience with the disease. He just sees dad as carrying on as normal.\u201d&nbsp;<\/p>\n\n\n\n<p>Jason and Hayley decided to be more upfront with the older boys, Jaye, 27, and Sam, 22.&nbsp;<\/p>\n\n\n\n<p>\u201cMy 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,\u201d said Hayley.&nbsp;<\/p>\n\n\n\n<p>Jason said: \u201cThe boys can see how well I\u2019m doing so I think they aren\u2019t as worried at the minute.&nbsp;<\/p>\n\n\n\n<p>\u201cI think their attitude is well \u2018Dad\u2019s fine, so you know we should be fine too\u2019.\u201d&nbsp;&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>\u2018To keep me on this earth\u2019&nbsp;<\/strong><\/h2>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/jason-and-family.jpg\" alt=\"Jason, his father Terry, mother Louise and brother Ricky. Image: Hayley Bowen.\" class=\"wp-image-75390\" width=\"403\" height=\"302\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/jason-and-family.jpg 300w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/jason-and-family-293x220.jpg 293w\" sizes=\"auto, (max-width: 403px) 100vw, 403px\" \/><noscript><img decoding=\"async\" src=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/jason-and-family.jpg\" alt=\"Jason, his father Terry, mother Louise and brother Ricky. Image: Hayley Bowen.\" class=\"wp-image-75390\" width=\"403\" height=\"302\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/jason-and-family.jpg 300w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2023\/02\/jason-and-family-293x220.jpg 293w\" sizes=\"(max-width: 403px) 100vw, 403px\" \/><\/noscript><figcaption class=\"wp-element-caption\">Jason, his father Terry, mother Louise and brother Ricky. Image: Hayley Bowen.<\/figcaption><\/figure>\n\n\n\n<p>\u201cOn the day the news broke in the media Jason had a meltdown &#8211; he just couldn\u2019t believe so many people wanted to help,\u201d said Hayley.&nbsp;<\/p>\n\n\n\n<p>Jason said: \u201cI saw all the support and I see people doing things just to keep me on this earth for as long as I possible.\u201d&nbsp;<\/p>\n\n\n\n<p>It costs approximately \u00a31,200 a month for Jason to have his physio, hydrotherapy and supplements.&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Read more<\/strong> about MND and sport <a href=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/2023\/02\/10\/doddie-weir-cup-cycling-555-miles-in-55-hours-is-a-challenge-of-a-lifetime\/\">here<\/a>.<\/li>\n<\/ul>\n\n\n\n<p>\u201cIt 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,\u201d said Jason.&nbsp;<\/p>\n\n\n\n<p>More than \u00a313,000 has already been donated to Jason&#8217;s <a href=\"https:\/\/www.gofundme.com\/f\/jason-bowens-motor-neurone-disease-treatment\">GoFundMe<\/a> page with the family aiming to raise \u00a320,000 to help him and his family for years to come.&nbsp;&nbsp;<\/p>\n\n\n\n<p>\u201cIt really has blown me away and I just want to thank everyone from the bottom of my heart,&#8221; he said. <\/p>\n\n\n\n<p>&#8220;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.&nbsp;<\/p>\n\n\n\n<p>Despite Hayley\u2019s mum\u2019s death hapening 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.&nbsp;&nbsp;<\/p>\n\n\n\n<p>However, it can cause negative side effects, which the family saw first-hand through Beryl&#8217;s struggle, and Jason doesn&#8217;t want to take the drug. <\/p>\n\n\n\n<p>\u201cI just thought, \u2018Nah, what\u2019s the point of that towards the end of my life, all that suffering, what\u2019s the point?\u2019 So I refused the drug,\u201d he said.&nbsp;<\/p>\n\n\n\n<p>Instead, Jason has been taking part in an MND trial for the last eight months.&nbsp;<\/p>\n\n\n\n<p>\u201cYou just got to keep fighting, keep positive and keep going for as long as you can,\u201d he said.&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>You can donate to the Bowen family&#8217;s campaign <a href=\"https:\/\/www.gofundme.com\/f\/jason-bowens-motor-neurone-disease-treatment\">here<\/a>&nbsp;<\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>Two years on from the Welsh football hero&#8217;s diagnosis, he speaks openly about his ongoing battle with Motor Neurone Disease (MND).\u00a0<\/p>\n","protected":false},"author":913,"featured_media":75325,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[2,14,3,4],"tags":[185,1291,186,8337,95,1886,8339,8338,2073,1817,339],"coauthors":[8086],"class_list":["post-75312","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured","category-longer-reads","category-news","category-sport","tag-bluebirds","tag-cardiff-2","tag-cardiff-city-fc","tag-doddie-weir","tag-football","tag-llanelli-scarlets","tag-mnd","tag-motor-neurone-disease","tag-newport-county","tag-swansea-city-fc","tag-wales"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.2 - 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