Towradgi's Ben Oakley has put together a video to show his ongoing struggle with a rare neurological disorder that affects one in a million people.
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It's hard to watch, but as his father Michael puts it: "It's even harder to live through".
In the video, posted on his Facebook page, "Roll On Ben Oakley", Ben can be seen briefly in the throes of a violent spasm.
The 19-year-old has stiff person syndrome and on his worst day late last year, he suffered 61 of these spasms - the longest one lasting for two hours.
"It's not like an epileptic seizure; I stay fully aware of what's happening - I can feel everything, I can hear everything," he said. "It's as if someone is holding a Taser to my back."
During these body spasms - which can be caused by a sudden scare, a cough or an upset - Ben's blood pressure and temperature spikes and he needs urgent medical assistance.
"Spasms can go for a couple of minutes, or a couple of hours - it doesn't matter how long they last, they're all life-threatening," he said.
Mr Oakley said he believed his son was the youngest person in Australia to suffer from the rare condition, which has no known cause or cure.
The family has now set up a charity, Drop a Dollar for Rare Diseases, to raise funds for all rare diseases. They're busy planning their first event, a fundraising walk from Towradgi to Bathurst on September 26.
"If we can find a cure for one rare disease, perhaps we'll find a cure for others too," Ben said. "There's so many rare diseases in the world - around 7000 different kinds - but because there's not enough people affected by each one, there's not enough funds for research into them."
The condition struck Ben suddenly on November 21, 2012, as he was riding his bike. Despite the pain, he nearly made it home before collapsing on his neighbour's front lawn.
He collapsed again at school, Holy Spirit College, the next day and was hospitalised but it took seven long months before he received a diagnosis.
The former fit and active young man now needs a wheelchair to help him get around, although physio in recent months has helped him progress to the use of a cane for short distances.
The aim of the self-confessed "rev-head" is to get his driver's licence back and do a lap of Mount Panorama.
"I've been lucky enough to drive around Bathurst - but not in the driver's seat."
Mr Oakley doesn't doubt his son will do it.
"Throughout this, he's kept his positive attitude and his big cheesy grin on his face - that's been his saving grace."
