As the NSW government moves towards legalising the use of meidcal marijuana, Jessica and Paul Tognoni hope Tasmania follows suit.
Like most children her age, 2-year-old April Tognoni loves playing dress-ups and dreams of one day going to Disneyland.
April was also a very sick little girl – her incurable condition known as Dravet syndrome, a severe form of myoclonic epilepsy, was causing more than 1000 seizures a day.
But now, thanks to parents Jessica and Paul turning to cannabis oil in a last-ditch bid to manage her attacks, April has made a miraculous turnaround.
“My little girl is smiling and for the first time she can look me in the eye,” says Jessica.
“I challenge any parent who says they wouldn’t do this to save their child’s life.
“She couldn’t even crawl before taking the oil and now every day we see her improving.”
After initially taking the oil every three to four hours orally through a syringe, April now only has the treatment in the morning and at night. As a result, she now has as few as six seizures a day.
Cannabis oil is low in the marijuana compound that’s psychoactive but high in cannabidiol (CBD), which is believed by many to have medicinal properties.
Scientists think the CBD quiets excessive electrical and chemical activity in the brain that causes seizures.
At their wit’s end, Jessica and Paul agreed to try it after watching an American TV show featuring an epileptic child whose symptoms were also eased by cannabis oil.
“When it’s life and death, you want to give your child the best chance,” says Jessica, also mum to Jonah, 6, Matilda, 5, and 10-month-old Alessandro. Jessica receives – free of charge – a regular supply of the oil from an unnamed source in NSW. She says she knows of hundreds of families using medical marijuana, despite it being illegal to grow or possess cannabis in Australia.
“It’s frustrating for parents of kids with epilepsy, knowing the benefits are so life-changing.”
Before switching to cannabis oil, April spent a week in the Royal Children’s Hospital in Melbourne, where she tried a number of different medications.
“None of them worked and she had bad side effects,” says Jessica.
“Her doctor here in Tasmania supports the use of the oil. He can’t believe what a remarkable improvement April has made.”
Jessica now hopes April will be able to go to school and live as normal a life as possible.
“She’s my special little girl and I will fight hard if I have to – she has so many dreams yet to fulfil."