Family pins hopes on cannabis tests
A rare degenerative brain disease means Brad Timms is living on borrowed time - but promising medical cannabis tests could help ease some of his pain.
Brad has Batten disease, a collection of inherited childhood brain illnesses, best described as a 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 late teens to late 20s. Brad will be 27 in December.
‘‘It’s a long, heart-wrenching process,’’ Ra Timms said. The seizures and the loss of 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.
‘‘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 could walk, talk and feed himself. Now, he can barely communicate and needs help getting dressed.
Hughes said researchers still had ‘‘a way to go’’ to make sure CBD was having the positive effects it seemed to be having.
Medicinal cannabis in CBD form remains illegal in New Zealand without 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.’’