EACH night, Michelle Whitelaw kisses her son Jai on the forehead not knowing whether he will make it to the morning.
For his entire nine years, Jai’s life has been a carousel of doctors’ appointments, emergency departments and specialist visits.
Suffering from a rare form of untreatable epilepsy, Jai has up to 500 seizures a day and is overseen by a team of eight neurologists.
His desperate parents Michelle and Andrew, from the northern suburbs of Brisbane, were planning his funeral when they heard about the remarkable success of cannabis tinctures in treating children with severe epilepsy.
“It was mid-2012 and Jai was in a vegetative state; he couldn’t walk or talk and he was incontinent,” Mrs Whitelaw said.
“I was spending up to 10 hours a day doing research online and I stumbled across the cannabis tinctures. I spoke to other parents, learned about their journey and was just blown away.
“I didn’t find one child who this did not help or who had complications from it. This was going to save my son’s life.”
More than 150 epileptic children in Australia are being treated by the tincture, supplied by Kempsey-based Mullaways Medical Cannabis.
A tincture is a form of cannabis oil that has an ultra-low level of THC, the psychoactive ingredient in marijuana.
After receiving a tincture in the mail, the Whitelaws told their neurologists they were going to trial it on Jai.
The response was both swift and devastating.
“We were told the AMA (Australian Medical Association) didn’t support cannabis medicines and if we used it, we would be reported to DOCS,” Mrs Whitelaw said.
“We live every hour of every day thinking his epilepsy will kill him and they were closing the door on our last hope.”
Fearing they would lose their son to authorities, the Whitelaws rejected the tincture but have joined the fight of Tamworth’s Haslam family to have medical marijuana decriminalised.
“What else can we do? We have a child with zero quality of life and if we treat him with the only medicine that seems to work, we could have him taken off us,” Mrs Whitelaw said.
“We’re lobbying every politician, every uni and the AMA and begging them to understand the urgency of the situation.
“It would change his life overnight. There are kids with epilepsy that are using this that have been taken out of intensive care and are walking and talking.
“We just want to know why the state health ministers aren’t even allowing trials and studies when it’s proven to be so successful.”
Tamworth mum Lucy Haslam said despite the fact a bill set to go before NSW parliament next month proposed decriminalising medical marijuana only for the dying, she hoped it could later be extended to other conditions.
“This (children with epilepsy) is one of the areas that really worries me because it’s being left out of the bill,” Mrs Haslam said.
“If I was a parent of this child, I would be screaming from the rooftops to have it legalised.
“It’s absolutely outrageous that opponents say there is no evidence of it working and then you have children going from 500 seizures a day to none on a tincture.
“That’s the best evidence you can get.”