Parents hold out for medical cannabis trial: Bethany Edwards plays at home with younger sister Lara. Photo: Brendan Esposito
On a bad day, four-year-old Bethany Edwardssleeps for more than 18 hours, has trouble holding a fork and finds it hard to walk without falling over or bumping into things.Bethany was 18 months old when she was first diagnosed with epilepsy. Now four, she suffers from night-time seizures and associated speech and learning difficulties.
"It's a constant struggle," said Bethany's mother, Karen Edwards.
As protocols are being drawn up for the clinical trial of medical cannabis to treat children with severe epilepsy, Karen and Brian Edwards are anxiously waiting to see if Bethany will be included when the trial starts next year.
"Epilepsy affects so many aspects of everyday life." Photo: Brendan Esposito
"[Epilepsy] affects so many aspects of everyday life," Mrs Edwards said. "Even just going on a holiday, we have to stick to major cities so if Bethany does have a seizure, there's a hospital that can deal with that."
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The clinical trial will be the first of its kind in Australia and part of a handful of similar studies carried out worldwide.
Dr John Lawson, paediatric neurologist at Sydney Children's Hospital and a principal investigator on the trial, said that up to 200 children from as young as six months of age may be included. Those enrolled will be at the severe end of the epilepsy spectrum, and at least a couple of standard medications will have to have failed to help them.
Mrs Edwards said Bethany's neurologist at The Children's Hospital at Westmead would be putting Bethany's name forward to be included in the trial, but there was no guarantee she would get in.
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Parents pin hopes on medical cannabis trial for children with epilepsy