If you knew medicinal cannabis could save your child's life, would you break the law? That is the dilemma facing 11-year old Paige Gallien's parents.
Paige has a rare and severe form of epilepsy called Dravet Syndrome.
Her mother, Kelly Gallien, told TVNZ's Sunday programme: "She's having up to 15 seizures a night now and it could happen any time of the day."
Born a perfectly healthy baby, Paige's seizures began at six months old and doctors prepared her parents Brent and Kelly for the worst.
"The information our doctor gave us at the time was that she probably wouldn't live past nine or ten."
Paige survived but her seizures are so bad they cause brain damage.
"She can't feed herself properly, she has trouble walking."
And pharmaceutical medicines aren't working.
"If you're on four pharmaceutical medicines you'd think it would be doing something, it's not doing anything."
Which is why Paige is the first child in New Zealand to be prescribed a cannabis extract called Sativex. The drug comes in a spray form and isn't smoked, her father Brent told Sunday.
"It's another unproven drug for Paige but it's the only legal form of medical marijuana we can get in New Zealand."
But the drug doesn't come without risk. Children's Commissioner Russell Wills is concerned Sativex may have harmful side effects, including sedation and hallucinations.
"We know that those side effects can be pretty substantial," says Dr Wills.
And because of that he knows parents who are breaking the law to make another form of cannabis oil they believe is safer.
"Parents are bringing it in themselves because they are desperate for a solution to a devastating disease."
Dr Wills told Sunday that overseas reports indicate some forms of medicinal cannabis may actually be safer and more effective than conventional medicines and he says we should be trialing their use for children here.
"The right solution is to enrol these children in a clinical trial."
A trial the Government has so far refused to approve.
The Galliens are cautiously optimistic that Sativex will improve Paige's condition. Although she has been taking the drug for less than a fortnight, they say they have noticed her seizures have reduced.
"She used to jerk all the time, when she was sitting on your lap you could feel her twitching and she has completely stopped, and her speech is a bit clearer and she's listening better, she has heaps more energy."
The question they face now is if Sativex doesn't work, would they follow other parents making their own form of cannabis oil they feel is safer. A risk Kelly Gallien is prepared to take.
"If Sativex doesn't work for Paige and if we had to go down the illegal side of things I would, I'd definitely do it for my wee girl."
The Galliens and other parents breaking the law by making and administering their own form of medicinal cannabis bravely speak out on SUNDAY.
SUNDAY, TVOne, 7pm tonight.