A father from Pembrokeshire has been given two years to live by doctors just six months after getting married.
On November 13, Barry Jones from Hakin, has been diagnosed with motor neurone disease (ALS), which has no known cure.
A professional pipe fitter, the 45-year-old suddenly started to experience symptoms such as restless leg syndrome, leg weakness, hand tremor and falls before his diagnosis.
Barry said: “I didn’t process it. I broke down. It was just awful. I feel stronger because of all the love I have received. At the moment I can still drive and climb the stairs. But the doctors don’t know when the condition will fully take hold.
“I’m following a gluten-free diet. If this gets me another day on this planet with my family, it will be worth it. We’re doing research and these tablets I’m taking might allow me to live an extra six months.
“But I don’t want to be comfortable. I want to be as active as I can. I’ve always been active, and I have a black belt in jiu-jitsu. But in the last year and a half, I have been in denial.
“There have been times when I’ve had really tight legs, and I haven’t been able to climb the ladder at work. One time I was stumbling around, and I fell face first, cutting my face open. I must accept I’m a disabled man now.”
However, Barry and his partner Holly are determined to try whatever therapies they can to prolong his life and not leave his children behind, including a nine-year-old daughter.
Holly said: “We are still in shock. It doesn’t seem real. We were completely numb to the news. It was the first time I saw Barry cry. But we are going to research this disease and try different therapies.
“I would fly to the moon for him to stay alive. I thought things like this only happen to people on television, not to people like you and me. It’s earth shattering. A world has been turned upside down.
“Barry has always been a full-time dad and very hands on. Yet it’s a struggle for him now when his nine-year-old is asking him for things this Christmas.”
A close friend of Barry and Holly, Mellissa Fairbairn has set up a GoFundMe page with the goal of raising £20,000.
At the time of writing, over £10,000 has been raised from 211 separate donations.
The money will go towards exploring clinical trials to prolong Barry’s life, purchase disability aids to help maintain independence and provide for his family during a difficult time.
To support Barry and his family, visit the GoFundMe page.
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