Tara O'Connell suffered from debilitating childhood epilepsy. After exhausting traditional treatment options, her family turned to medical marijuana in desperation.
Tara O’Connell used to suffer from 65 to 200 epileptic seizures every day.
When she was three years of age, Tara began treatment under her doctor, Dr Paul Carter.
She had already been diagnosed with catastrophic epilepsy of infancy.
“Her IQ was being thumped into nothing by the condition and the medication," he said.
"So it wasn’t just that they were dealing with a sick child, they were dealing with a child who was actually becoming sicker and sicker and sicker, and they knew that sooner or later she would die of this.”
In 2012, Tara’s mother, Cheri was told there were no further options for treatment to try.
“We were basically told to prepare a funeral,” she said.
Because of the lack of efficacy of available treatments, Ms O'Connell went looking online for more unorthodox solutions, and came across medical marijuana, legal in over a dozen countries.
“Our biggest concern was the law," she said.
"We weren’t concerned with it not working, whether it would get her high – which it doesn’t – they were not concerns because she was already high on all the other medications.
"She was already dying. We couldn’t make the situation any worse.”
She discovered Tony Bower’s company, Mullways Medical Cannabis, which delivers medical marijuana across Australia at little or no cost to the customers.
Mr Bower started using marijuana in his teens after a motorcycle accident left him in severe pain, and has been a commercial grower for most of his adult life.
He has not sold his product commercially for more than seven years.
Mr Bower claims the medicine is 97 per cent free of psychoactive chemicals, and estimates that 10,000 to 20,000 children are waiting to be able to access the treatment.
Tara was the first child he treated.
The first day Tara took medical marijuana, she went down to about 10 seizures.
Ten days after she began the medication, she stopped having seizures.
She has had only one seizure since then, and has been seizure free since April 2013.
Dr Carter described her response to the treatment as miraculous.
“She’s on a very small dose of marijuana in a liquid form, and I’m not aware of any side effects," he said.
"For the very first time, she’s now potty trained, in a way that simply wasn’t possible to do before.
"She’s talking better, she’s walking better. I see nothing but positives.”
However, her continued access to medical marijuana is in jeopardy.
In 2013, Mr Bower spent six weeks in prison on charges of cultivating marijuana, before being released on a good behavior bond.
After continuing to grow marijuana for medical use, he is due to appear in court on charges of cultivation and breaching his bond.
"There is a chance that I could go to prison for two years," he said.
"The business wouldn't be affected. It would be these children’s lives.”
Pending the court case Tara has a supply of her medication, as do the company’s other 150 clients, but if Mr Bower is jailed she would have to seek alternative treatment again.
Mr O'Connell said: “I have no doubt that is he does do jail time, Tara will die.”
The O’Connells are one of hundreds of families across Australia breaking the law by using medical marijuana.
The Australian Medical Association says there isn’t enough evidence to support legalization.
Dr Saxon Smith, the AMA NSW’s president, is cautious about rushing to legalise the treatment.
“There’s growing evidence in these segments, but it still remains quite controversial … We really don’t know what the long term consequences are of these medications, both in terms of whether the drug maintains its benefit to the patient, and its safety in a long term sense," he said.
"There's a potential for great variation between each individual batch that's being made… it may have more beneficial or more negative effects each time; we don't know."
NSW Nationals MP Kevin Anderson believes in decriminalisation.
He has presented a private members bill to the NSW government to legalise medical marijuana use for the terminally ill.
He sought support for the bill after a 24 year old man in his electorate started using marijuana to ease the side effects of terminal cancer.
"I think the time has come to address issues like this," he said.
"This has only been spoken about behind closed doors. What I have heard and seen has led me to this position.
"We're seeing families access cannabis illegally now.
"What we need to do is to try to give them some confidence and some peace of mind that if this bill does pass, they will not be breaking the law."
Despite its current criminal status and lack of support by the AMA, Dr Carter is open to the use of medical marijuana.
"I know nothing about this medication, in fact, and really do not feel able to comment on long term effects," he said.
"All I know is that for the last 14 months, we've had a miracle.
"This child has gone from disabled, and the whole family focused on her illness, to a normal family and a normal child."
Tara recently celebrated her ninth birthday.