Photo: Sophie Martin has spent every birthday since she was three in hospital. (Supplied: Shellie Martin)
Even on a good day, eight-year-old Sophie Martin has hundreds of seizures.
When she has a severe seizure, she turns blue and cannot breathe.
She has been in and out of hospital since she was 10 weeks' old.
And there have been close to 100 admissions to intensive care.
Every day her parents, Shellie and David, move mountains to try to give her some quality of life.
Their lounge room is like a miniature hospital, complete with resuscitation trolley.
Even the simplest of tasks, like going outside, are a mission — they have to go armed with a paramedic bag.
The decision makers, say the Martins, have "zero idea of what it is like to have a child this sick".
They are talking about medicinal cannabis.
'We have no more options'
Photo: Shellie and David Martin have to source cannabis oil for their daughter Sophie from overseas. (ABC News: Claire Moodie)
The couple are speaking out for the first time about their illicit use of the drug.
In March, after a big decline in Sophie's condition and yet another harrowing stint in hospital, the Martins told doctors that they had made a decision.
"I said to the doctors, I'm just doing this now on the record," Shellie Martin told 7.30.
"Because we have no more options."
The Martins decided to order a low THC cannabis oil on the internet from a company based in Colorado in the US after watching the progress, years earlier, of a young girl with the same incurable condition, Dravet Syndrome.
"She went from being — I don't want to use the word vegetable, but on some days that's what they are, they can't do a thing — to being active and being productive," Mrs Martin said.
"And I just went, I need that for my little girl."
'It is making a difference for my daughter
YouTube: After taking cannabis oil, Sophie Martin went 16 weeks without having a Status Epilepticus event like this one.
The couple do not think it is a miracle cure.
But, they do believe that the tiny dose they give Sophie somehow eases her symptoms.
As well as Dravet Syndrome, Sophie has cerebral palsy and chronic lung disease.
"Since using the cannabis oil, Sophie went 16 weeks without a status epilepticus event," Ms Martin said. (Defined as a seizure that lasts more than five minutes.)
"Previous to us starting that oil, she was having these events every two to four weeks.
"We still need pharmaceutical medications but I absolutely, 100 per cent, believe that it is making a difference for my daughter."
Medicinal cannabis was legalised for use under strict conditions by the Federal Government last year.
Yet, the Martins are among families across the country who find themselves in no-man's land, stuck between the old world and the new.
They are still buying their medicinal cannabis on the black market, "flying blind" as part of their own medical experiment.
Complex regulations prove a hurdle
Photo: Despite medicinal cannabis now being legal, may Australian families find it difficult to access. (Supplied: AusCann)
Carol Ireland of the group Epilepsy Action Australia said many other desperate families were in a similar predicament.
"We've certainly heard of families who are using an illicit product and they are going to their doctors and they're trying to get a prescription for a legal product, they don't want to be breaking the law," Ms Ireland said.
"However, that's really, really difficult.
"When they seek approval from the government, the government is expecting some research in terms of the efficacy of the drug that they are asking for and that research is not there yet.
"So the doctors aren't comfortable. The doctors aren't prescribing."
Compounding the hurdles, say the families, is a patchwork of complex regulations.
State as well as Commonwealth approval is needed before medicinal cannabis can be prescribed.
And each state has its own regime.
At the federal level, medicinal cannabis can be prescribed under two schemes, the Special Access Scheme and the Authorised Prescriber scheme.
National figures from the Therapeutic Goods Administration (TGA) show there have been 82 approvals for prescriptions under the Special Access scheme since November last year.
And it says 60 patients have been treated with medicinal cannabis by specialists who have applied to become Authorised Prescribers since January 1.
More research needed: AMA
Photo: Dr Omar Khorshid is cautious about the use of medical marijuana. (ABC News: Claire Moodie)
The Australian Medical Association (AMA) said the rollout of medicinal cannabis is being tightly controlled because there is little clinical evidence to support its use.
"We don't know a lot about it, we don't know for whom it works and for whom it doesn't work," the AMA's WA president Omar Khorshid said.
"What that means for doctors is that we've got be very cautious about how we implement medicinal cannabis use."
A recent Victorian trial found 40 per cent of children had their seizures halved while on medical cannabis and 5 per cent became seizure free.
But the AMA argues far more research is needed before the drugs can be widely used.
It believes the new federal laws are premature.
"My first reaction was that it was a populist move by a government responding to a community need," Dr Khorshid said.
"It's very easy for a politician to say yes to people.
"But at the end of the day, when a doctor is sitting with a patient, they have to have a different conversation."
Originally published here: http://www.abc.net.au/news/2017-07-26/cannabis-oil-is-making-a-difference-for-my-daughter/8745312