An Armadale mother is encouraging the community to get involved in Epilepsy Action Australia’s E-Tea campaign in November to burst some myths and raise some money to find a cure for the common brain disorder.
Jessica Howson found out her son Taj, 8, had four forms of epilepsy in 2011.
He has up to 40 seizures a day and that means regular trips to the hospital.
Ms Howson said they were still having trouble controlling the disorder.
“This year’s been one of the hardest for us with him,” she said.
“I had to give up work for five months because he was in and out of hospital every two or three weeks.
“In the past year we’ve had 10 ambulance trips.”
She said the seizures have had an impact on the rest of Taj’s life.
“He’s unable to function normally until he’s completely out of it,” she said.
“He loses control of his bladder, is unable to speak properly, he’s fallen off playground equipment.
“He’s not allowed on the monkey bars at school, he’s not allowed to take a bath on his own, for swimming lessons he has to have someone in the pool with him.
“That’s the biggest thing, him not being able to have a normal life.
“All he says is, ‘can’t you make my epilepsy go away, can’t you fix it mum?’ and that’s heartbreaking.
“I wish I could just fix it, I wish it was as easy as that.”
Ms Howson said there were some misconceptions in the public as what epilepsy actually was.
She said she hoped the E-Tea campaign would address those misconceptions.
“It’s about bringing awareness that epilepsy or a seizure isn’t just falling on the floor and shaking,” she said.
“There are 40 different seizure types and Taj has four of them.
“Taj will have a few seizures in a row when we’re out and he’s not listening to me but people will interpret it as him being naughty.”
The E-Tea campaign from Epilepsy Action Australia is a nationwide community fundraising initiative that encourages supporters to host their own morning or afternoon tea events to raise funds and awareness for the condition.
An estimated 65 million people across the globe are currently diagnosed and in Australia it is estimated more than 250,000 Australians currently live with it.
Epilepsy Action Australia chief executive Carol Ireland said people living with epilepsy faced a multitude of challenges that prevented them from leading optimal lives.
“It can be a lonely and isolating condition, leading to anxiety or depression, it can consume families mentally and financially and it can impact dramatically on children’s learning,” she said. “Then there is the social stigma and exclusion that still occurs.” She encouraged the community to pop their kettle on this November and host an E-Tea event.
Epilepsy Action Australia are giving away free goodie packs containing lots of delicious treats and baking supplies, as well as tea and coffee samples to anyone who registers to hold an event. Visit epilepsy.org.au or call 1300 37 45 37.