AMALIE Telo was just six months old when she suffered her first seizure.
It was a result of lissencephaly, a life limiting disorder causing epilepsy.
Today the five-years-old’s seizures are so frequent her mum Renae does not even bother counting them. It affects her whole life, with the seizures taking a lot out of her young body.
“It can vary from tiny little millisecond eye flicker ones to big 15 to 20 minute episodes,” Mrs Telo said.
“As soon as one of her seizures goes over five minutes we give her emergency treatment and we’re giving that to her nearly every day – sometimes multiple times a day.”
The Aubin Grove family have tried a range of treatment options but none of them has had any positive affect.
Mrs Telo said the use of medicinal cannabis was a hot topic and something the family were keen to try.
“We’re not pinning all hopes that it is going to be the answer,” she said.
“We’ve tried a lot of different things – medication, diet – and that hasn’t had any impact controlling her seizures.
“So we’re willing to give the medicinal cannabis a go.”
Mrs Telo said sourcing the product from an unregulated source, while tempting for some families, would be risky, considering the lack of guidance.
“The legislation changes are a very good thing for WA and Australia,” she said.
To keep up to date on Amalie, search Amalie’s Journey on Facebook.