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Jason Williams to ride from Gold Coast to Sydney and back after being given rare, terminal diagnosis

Jason Williams will begin his return ride to Sydney in just over a week. (Supplied: Jason Williams)

A Tweed Shire father-of-four is riding more than 1,600 kilometres from the Gold Coast to Sydney and back after receiving a terminal diagnosis and being told his body will shut down organ by organ within years.

Former firefighter Jason Williams said he wanted to make the most of his final years by increasing awareness about the rare degenerative disease, and raising funds to leave behind for his young family.

The 49-year-old hopes his story will help others faced with terminal illness, and inspire everyone to make the most of the years they have.

The first sign something was wrong

It started as a tremor in Mr Williams' right hand.

Within years, the Banora Point dad was diagnosed with early onset Parkinson's disease, but was told by doctors that with medication, his life and career as a firefighter would go on as normal.

"They gave me a book and scripts and said, 'Take this medication and you should lead quite a normal life and can still complete most of your working career'".

A shock diagnosis

But last month, after visiting a specialist in Sydney, Mr Williams received a new, terminal prognosis.

He was told he had a rare degenerative form of Parkinson's disease, known as Multiple System Atrophy (MSA-P), which threatened to shut down his whole body within years.

"This one's got a life span," he said.

"We thought my life would be a normal life up until then, but now they're claiming my life's going to be a lot shorter.

Jason Williams with his family. (Supplied: Jason Williams)

"The life span of the person is normally 15 to 20 years from your first symptoms, so they took it back to when I got my first tremors.

He 'will never give up' 

Mr Williams' wife Tina said it was difficult news to bear about her otherwise healthy, happy husband, who'd been enjoying the "prime of his life" with their daughters.

"It's terminal, there's no cure, no medication or treatment to help slow down the progression," she said.

"From being bedridden with no muscle movement, no longer being able to talk, eat or breathe without a machine, and eventually his heart will no longer beat.

"But Jason will never give up".

Mr Williams with his New South Wales Fire and Rescue crew. (Supplied: Jason Williams)

The ride of Jason's life

Not knowing when his organs will eventually begin to fail, Mr Williams is taking the bull by the horns, and in just over a week plans to ride 1,600 kilometres, to raise awareness about Parkinson's, MSA-P and mental health, and the organisations which have helped him through his illness.

"I want to try and stop and talk to people [on the way], it's not a race, I just want to complete it.

"That's my goal, I can't change the world, but if I can touch a few people, for me that's an achievement.

"I'm very determined".

He was a fighting fit firefighter until about two years ago. (Supplied: Jason Williams)

Mr Williams will start his ride at the LIVIN, Burleigh headquarters on June 28, before making 13 stops and eventually ending at Ettalong Beach, Sydney around July 14.

"The two charities I am raising awareness for are LIVIN, who support mental health and Shake It Up in support for more research into early onset Parkinson's," he said.

A GoFundMe page set up to support Mr Williams' cause has already raised over $30,000, with donations being made from across the country.

"I'm usually a giver not a taker so it's hard for me to ask, but every dollar raised will go into funding my journey over the last years of my life and helping support my wife and four daughters," he said.

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