A Melton mum is on a mission to highlight the “wonderful” work of the Epilepsy Foundation that is set to lose more than $1 million in annual state government funding.
When Julia Vieira’s eight-year-old daughter Liliana was diagnosed with myoclonic epilepsy three years ago, the family didn’t know where to turn. Ms Vieira said the hospital couldn’t be of further help after Liliana was discharged, so their neurologist suggested they contact the Epilepsy Foundation.
“You ring them up and they are on the phone assisting you,” Ms Vieira says. “If the person, or the family, is going through depression, the foundation can assist. If those services aren’t there, who’s going to help us?
“There’s no one else out there to listen to you – your doctor is too busy, hospital is overwhelmed and they don’t know how to handle it further than observing and monitoring.”
The Epilepsy Foundation, MND Victoria, Multiple Sclerosis and Parkinson’s Victoria will lose in total $5 million state government funding from July 1, 2019, as the National Disability Insurance Scheme fully rolls out.
These four organisations collectively support more than 80,000 people.
Ms Vieira said the Epilepsy Foundation provided support for her in her darkest days, and any blow to funding will come at a cost to the lives of people living with the neurological conditions and their families.
“It’s just very scary,” Ms Vieira said. “Neurologists have said Liliana can die at any stage in her sleep, as a seizure can affect her while she’s sleeping.
“We have a baby monitor, a camera with a motion sensor … a camera system on my mobile phone. She’s not allowed to swim on her own, she’s not allowed anywhere in the house on her own. I’m constantly on edge every day.
“It can be stressful, but the Epilepsy Foundation encourage me in every way. They encourage me to be the best person and mother I can be.”
A spokesman for the foundation said 80 per cent of Victorians who have epilepsy are not covered by the NDIS. And those who are, won’t have their management plans funded.
The foundation is calling on people to contact their state MP to highlight the need for funding to continue. Ms Vieira has started a petition at bit.ly/2CruJ4B.
The state government was contacted for comment.
