‘The hurt is always there’: TV personality Matt Preston opens up on loss of his brother to epilepsy

Popular TV personality Matt Preston has opened up about the tragic death of his younger brother in a bid to raise awareness about the little-known condition that claimed his life.

Matt Preston has opened up about losing his younger brother to sudden unexpected death in epilepsy. Picture: Supplied

Matt Preston has opened up about the loss of his beloved brother William and continuing efforts to raise awareness for the condition that cut short his sibling’s life.

The globetrotting foodie and TV personality lost his younger brother in 1988, at age 22, to sudden unexpected death in epilepsy (SUDEP). The little-known condition claims 170 lives in Australia each year.

“The hurt is always there, it’s left a 35-year hole,” Preston said.

“You have moments, he’d be 58 now and there is a sense of void. We think our tragedies are personal but they’re often shared.

“My mum dealt with her grief by being a passionate advocate for awareness and research. If you know about SUDEP it can reduce the chance of death by 69 per cent. Research is key.

“He’d only had one previous seizure we knew about. Epilepsy is a bit of a taboo subject and I bump into people in the medical profession who still don’t know about SUDEP.”

Matt Preston with his brother and two sisters.

Preston said SUDEP occurs when an otherwise healthy person living with epilepsy dies suddenly and prematurely, with no identifiable cause of death.

Wednesday is SUDEP Action Day.

Preston was 27 at the time of the tragedy and said he and his two sisters often look at the table when they get together and wonder “what if”.

“While I’m grateful that today we know more about epilepsy, the impact of seizures and most importantly the risk of SUDEP, unfortunately we are still losing too many lives to this condition. With more awareness and research about epilepsy we can hopefully prevent these tragic and unnecessary deaths,” Preston said.

“It fundamentally affects young people, males aged between 20-40, but now it seems to have broader consequences.

“The impact it has on family, friends and partners, it’s all of the terrible things.

“You tend to find people who totally shut down or do something. The Alannah and Madeline Foundation is a big example of (the latter).”

Matt Preston says his mother was ‘incensed’ about the way paramedics handled his brother’s death. Picture: Jake Nowakowski

Preston has worked with Epilepsy Action Australia, which supports approximately 270,000 people living with epilepsy in Australia.

He said his mother Jennifer, who died two years ago, was a big advocate for SUDEP Action.

“I found a letter my mum wrote about discovering my brother in his room on the floor,” he said.

“She called an ambulance and the first time she realised he was dead was when they came in with big sheets that had a big blue sticker that said refrigerator. She was incensed about how insensitively it was handled and she wanted to make sure there was support for the bereaved. A good way of remembering William is to talk about this.”

The National Epilepsy Line is 1300 37 45 37.

www.epilepsy.org.au