Every day, Shellie Martin gives daughter Sophie a cocktail of potent barbiturate sedatives and tranquillisers to try to control life-threatening seizures that rack her.
The five-year-old is addicted to the drugs but often even they cannot control her severe epilepsy.
But she cannot get medical cannabis, a drug that could help control her violent seizures with fewer side effects.
Her parents are frustrated that Sophie and 3000 other WA children are denied potential relief from their uncontrolled epilepsy.
Cannabis is not approved for therapeutic use in Australia but various State governments are being lobbied to legalise its use.
Health Minister Kim Hames is against medical cannabis, arguing it would work against messages to stop people smoking marijuana, but WA Labor leader Mark McGowan wants people with terminal or chronic illnesses to have access to it in tablet or spray form.
Sophie has cerebral palsy and Dravet syndrome, a rare and catastrophic form of epilepsy that is difficult to control. She has spent a third of her life in Princess Margaret Hospital, including nine stays in intensive care this year.
"We never know from one hour to the next how she will be and I can't even go to a yoga class without worrying something might happen," Mrs Martin said.
She and her husband want to work with their doctor to try Sophie on medical cannabis.
"It is making a huge difference to some children with epilepsy and families wouldn't be making it up," she said. "The momentum has gone too far to say let's do a trial and instead we must allow families to have the right to use it."
Mrs Martin said 24,000 people in WA had epilepsy and it was uncontrolled for 7000 of them.