Mother's plea: don't make me watch my daughter die

A TEWANTIN mother has broken her silence about the benefits of medicinal marijuana after more than a decade of watching her daughter suffer catastrophic seizures. Sue began administering cannabis oil to her daughter Jazz, 12, who has a rare acute epileptic condition called Dravet Syndrome, in the middle of last year. "With what Jazz has, there's no known cure," Sue said. "She was on four pretty heavy epileptic drugs, but still had seizures. A minimum seizure before for Jazz was 35 minutes. "There would be days where she might have 12 big catatonic seizures during the night and day, so her whole day was wiped out. "Then it'd take a couple of days to slowly recover from that, and then it'd start again. It's a very hard condition to control." Sue said she had seen significant changes in her daughter's quality of life and she was coping better with day to day situations. "There's big differences," she said. "Overall she still has seizures, but definitely not nearly as many, and the length of them is reduced. They might only be a minute in the chronic stage now. "We were having trouble getting her to eat. She's eating now, she actually has an appetite, and she's sleeping a lot better. "We've had quite a few friends pass away from this condition and it's a drive to want to make your child be different." Sue said Jazz had been medically diagnosed with stunted growth and she had observed her suffering from a number of other side effects from taking strong epilepsy drugs. Sue has cut Jazz's cocktail of heavy pharmaceutical medications down to a fraction of what it used to be since using medicinal cannabis. Sue gets the medicinal cannabis from a health centre in Newcastle, New South Wales, which supplies families with the product illegally. State legislation legalised access to medicinal cannabis late last year, but Sue said the amount of red tape required makes it near impossible. "They've got to source the product from overseas, and it's a very, very lengthy process," Sue said. "It's pretty much made to not work. I don't know of anyone that's succeeded." Sue understands the risk of being caught, but it's a risk she's willing to take to see her daughter alive and healthy. "I've had a few friends confronted by child services, and by the police, and that's nerve-wracking," Sue said. "You've got to do what you've got to do to keep them as healthy as you can. And if you find something that works, that's what you've got to do." Speaking through tears, Sue said the chance of Jazz dying suddenly was very real. "There's a young girl I've known for years with a similar condition, she's 12, just like my daughter - her funeral is today (last Friday)," she said. "Because Jazz's condition is so rare, it's a high risk for SUDEP (sudden unexpected death in epilepsy). "Every seizure can take their life. I don't want to be that person. "With not as many seizures, not as long, and an appetite, I see hope for her then. She might be the difference, she might be the one that gets through. "Whereas before, I just felt like I was slowly killing her. I wasn't doing anything to help her." Sunshine Coast medical marijuana advocate Bec Bridson has been campaigning for easier access to medical marijuana for families like Sue and Jazz. She said she has liaised with authorities on the issue for years. "I've been liaising with Queensland Health for two years. They asked for statements, records, evidence, and we did all of that," Ms Bridson said. "But we're not asking permission any more. These kids haven't got months and months to wait. We know we're doing no harm." Ms Bridson and Sue agree that if medicinal cannabis isn't easily accessible soon, bestowing amnesty to families using it would be the first step. "Our doctors and our police and the front line staff, they're not the enemy - it's the government and the systems in power that's the enemy," Ms Bridson said. "It's heartbreaking. It's either let innocent people suffer, or break the law and give them their life back." http://www.noosanews.com.au/news/mothers-plea-dont-make-me-watch-her-die/3136239/