Mum clinging to hope that cannabis extract could help her son who has Batten disease, a rare brain condition
A rare degenerative brain disease means Brad Timms is living on borrowed time - but promising medical cannabis tests could at least help ease some of his pain.
Brad has Batten disease, a collection of inherited childhood brain illnesses, best described as a hellish combination of Alzheimer's, epilepsy and blindness, for which there is no effective treatment.
His mum, Ra Timms of Timaru, lost her youngest child, Jordyn-Rose, to the disease in August, 2012, at the age of 19.
Brad was diagnosed with the debilitating illness in 2016. The life expectancy for juvenile Batten disease is between late teens and late 20s. Brad will be 27 in December.
"It's a long, long, heart-wrenching process. There's a lot of love, a lot of happy moments, but you can guarantee they are squashed by the pain you see them in," Ra Timms said.
The seizures and the loss of their abilities were the hardest things to watch.
"You feel so goddamn powerless."
It's this desperation that has spurred on University of Otago biochemistry and genetics Associate Professor Stephanie Hughes who has used mouse models to test how cannabidiol (CBD) might improve associated seizures and pain in Batten disease.
"It seemed to, at least in some forms of the disease, minimise the seizures, and probably also has an effect on the pain."
About four Kiwis are born each year with the disorder, which can be detected in different forms at any age from two to adulthood.
"Until now, if you get a diagnosis, a clinician will say: 'Take your child home, there's nothing we can do', and a lot of families aren't accepting that now."
A year ago, Brad Timms could walk, talk and feed himself.
Now the 26-year-old can barely communicate and needs help getting dressed, despite being on five heavy duty medications.
"He's still plugged into the world, but it takes all our time to interpret for ourselves what he's trying to tell us," Ra Timms said.
Hughes said researchers still have "a way to go" to make sure CBD is having the positive effects it seems to be having, she said, and it's important not to rush into anything.
Medicinal cannabis in CBD form remains illegal in New Zealand without prior doctor approval, and is not funded.
"I just figured no-one was going to approve it in New Zealand till we have some kind of scientific basis for it," Hughes said.
Hughes is about to begin testing combinations of tetrahydrocannabinol (THC) and CBD and their effectiveness in Batten disease.
Timms said the process was painfully slow.
"This [cannabidiol] needs to happen soon. Time is our worst enemy."
Timms stood at the foot of her daughter's bed for three days in a row massaging her, as none of the drugs were bringing her relief from her seizures.
"For my children - I've been to hell and back, and I've got my next trip booked."