Picture this: you have just given birth to a precious, perfectly healthy baby boy. However at just four-weeks-old, your tiny newborn contracts meningitis and is left with severe brain damage, cerebral palsy, epilepsy and multiple types of seizures for the rest of his life. As a parent all you can do is watch while your child thrashes around uncontrollably on the floor, tens, sometimes hundreds, of times a day with no means of helping. Sounds like a nightmare right?
Not for Cassie Batten and Rhett Wallace who experience this helplessness daily. The pair, who live with their seven children in Mernda in Melbourne’s northeast, could do literally nothing for their son, Cooper, as he suffered seizure after seizure, day after day, while doctors tried every kind of medication available with little impact.
When Cooper was two and a half years old, Cassie and Rhett reached breaking point, realising that their son was now in a life or death situation. In desperation they turned to a last resort: an illegal treatment they had heard about from other parents at palliative care programs, but as law-abiding citizens, had been too wary to try until this point.
“At two and a half, he dropped down to eight kilos, he was just lying there; he was a shell. There was no personality; he couldn’t eat or drink, he couldn’t sit, he couldn’t even support his own head,” says Cassie.
“And we just thought we’ve got nothing else to lose. We’d tried 13 seizure medications, he was on other medications as well for muscle spasms and we thought, why not, at least just try it and try and keep him comfortable? It was basically preparing for his death,” she recalls.
With nothing left to lose, Cassie and Rhett made the decision to administer Cooper with cannabis oil.
Cassie still remembers the feeling of giving Cooper his first dose: “My hand was shaking. We were very, very uncertain. Am I doing the right thing? What if something happens? There was a lot of fear going through our heads obviously.”
But their worries were put at ease when Cooper reacted incredibly to the treatment. His improvement was almost immediate after that first dose, a transformation that stunned both his parents and doctors.
“He ate about half an hour after his first dose. He hadn’t eaten orally in months and he actually kept it down. It just progressed from there,” Cassie says.
Since that day, Cooper has developed in ways his parents never imagined, developments they say can be traced back to the addition of cannabis oil to his milk, four times a day.
“He began initially just getting up on all fours, then he was sitting up and he was crawling and it’s just been a good progression since…I wouldn’t say he’s verbal, but he’s making sounds and he’s able to eat and drink,” says Cassie.
For Cooper, the use of medical cannabis oil has been life changing.
“We do still see some seizures but they’re not as severe and they’re a lot shorter. He’s only had one where he’s needed resuscitation in the past two years, whereas previously it was a few times a week,” Cassie says.
“This year he’s had 20 days in hospital. Two years ago he only had 16 days at home in a year.”
Cooper’s miraculous recovery makes it easy to forget that what Cassie, Rhett and hundreds of other parents around the state are doing, is illegal. While they are acting to relieve the pain and suffering of their children they are forced to continuously break the law in order to do so.
But this could soon change. After an election promise by Victorian Premier Daniel Andrews to legalise medical cannabis and a report by the Victorian Law Reform Commission (VLRC) in August, Victoria is set to begin medical cannabis trials soon.
The VLRC report acknowledges that cannabis may have medical properties but says more evidence needs to be gathered before it is be legalised.
The report quotes the Australian Medical Association’s viewpoint: “AMA Victoria acknowledges that there is ‘some evidence to suggest that cannabinoids are effective for the treatment of neuropathic pain, muscle spasticity for patients with [multiple sclerosis], and in controlling nausea for cancer patients.”
Victorian Minister for Health Jill Hennessy confirmed the Government would begin medical cannabis trials very soon and, if all goes to plan, children with conditions like Cooper will be the given the treatment as a priority.
“Children with severe epilepsy will be the first to access medicinal cannabis in early 2017 because their condition can be life threatening and medicinal cannabis may be their last treatment option,” said Ms Hennessy.
However, according to doctors such as Andrew Katelaris, those who are truly in need cannot afford to wait this long.
“I’ve had people on my waiting list, drop off, and die, waiting for the medicine. Whereas the ones we’ve treated, the lucky ones, have had their lives turned around,” says Dr Katelaris, who has been dubbed, “Dr Pot.”
Dr Katelaris believes so strongly in the medical properties of cannabis that he has used and continues to use it to treat many of his patients, a practise that resulted in his deregistration as a doctor in 2005. Regardless, he stands by his beliefs.
“It’s doing them the world of good. That’s the actual fact that the naysayers and the opponents have to take on board: the stuff works,” says Dr Katelaris.
He argues that standard medications prescribed by doctors can have a wide range of side effects and in some cases are not even as effective as medical cannabis.
“Those who have suffered a huge litany of side effects from the allopathic drugs…often are told to go home and die because there is nothing more that can be done. We’re getting positive responses in up to 80 per cent of those people,” Dr Katelaris says.
However, without controlled trials having been conducted yet others are more skeptical.
Among the skeptics is Drug Free Australia (DFA), an association who argue that not enough research has been done about the potentially harmful effects of cannabis, both short and long term.
Dr Katelaris refutes this claim, stating that cannabis use for medical purposes is incredibly safe.
“There is no lethal overdose of cannabis; you cannot poison the body. So there are no conceivable concerns for safety. There has never been a safer pharmacologically active substance discovered or used,” says Dr Katelaris.
Cassie Batten’s agrees. She says her son has not experienced any negative side effects from cannabis use, “only positive ones”.
DFA also raises concerns about the addictive nature of cannabis and the potential for cannabis to become more easily accessible for recreational use should it be legalised.
However, the State Government says medical cannabis will only be made available to those in “exceptional circumstances” and will be treated like any other prescription medication.
The VLRC report says medical cannabis will only be available for those with severe muscle spasms, multiple sclerosis, severe pain arising from cancer or HIV/AIDS or severe seizures that have not been brought under control by regular epilepsy medications.
While more research needs to be conducted before cannabis can be legalised for medicinal purposes, parents such as Cassie and Rhett have no choice but continue to break the law to help their son. They know that without cannabis oil, Cooper would be suffering far more than he is now.
Cassie tells of such a situation: “We did run out of supply early this year and within two days he went into status (which is constant seizure activity) ended up at the [Royal Children’s Hospital] and they estimated one day he had 900 seizures. We managed to get oil from overseas at the time and he was home two days later.”
The immediate impact medicinal cannabis has on Cooper illustrates its potential as a powerful medical tool and shows cause for its swift legalisation.
It is scenarios such as this, where medical cannabis has obviously made an impact on someone’s quality of life, that explain why people such as Dr Katelaris have dedicated their life to an illegal activity.
“I have seen the miraculous turnaround that medical cannabis can bring to people’s lives and our work will only be complete when there’s absolutely no legal impediment to the production and consumption of cannabis medicines,” says Dr Katelaris.