A young man struck down with a rare illness fears he has just months until life-threatening seizures return after his medical cannabis supply was cut off.
Ben Oakley was a triathlon-fit teenager when the nervous system disease Stiff Person Syndrome left him wheelchair bound.
He was forced to stomach more than a dozen pain and epilepsy pills every day in a desperate bid to stave off spasms, and says he once suffered 61 terrifying fits within nine hours.
Just over two years ago, he was approached by an altruistic medical cannabis supplier offering a miracle cure.
He has only had three brief spasms since.
"I've improved so much, I've been able to reduce so much medication," said Mr Oakley, who rose from his wheelchair on Thursday speak with reporters in Canberra.
"I can't get over how much this stuff - as simple as a herbal plant tablet - can give me the life again that I deserve at the age of 21."
But a January police raid on the north Adelaide home of 44-year-old Jenny Hallam has severed supply said to benefit Mr Oakley and hundreds of sick and terminally ill Australians.
What happened on January 4 had literally "held a gun to my son's head," his father Michael Oakley said.
"Ben and hundreds of other people Australia-wide are literally in danger now because (the federal government) haven't moved quick enough on a medication that they should have."
The Turnbull government last year introduced legislation allowing the controlled cultivation of cannabis for medicinal or scientific purposes through a nationally consistent licensing scheme.
However, Ben and Michael Oakley are frustrated the government is not moving fast enough, saying there is no effective access to the drug anywhere in the country, with users and suppliers still facing criminal sanctions.
The pair have travelled to Parliament House to lobby government ministers to hasten their progress.
Ben Oakley is deeply concerned about what may confront him when his cannabis oil runs dry, but is more worried about the plight of sick children deprived of the drug.
"They're without oil now, they're suffering, they're going backwards," he said.
"People are going to die unless the government move and move quickly on this."
