A Mackay father is urging Australians to talk more openly about the silent and little-known risk of Sudden Unexpected Death in Epilepsy (SUDEP), three years on from the devastating loss of his 25-year-old son, Finley.
“Fin had his first seizure at 22 and died at 25,” said Greg Smith.
“He’d been seizure-free for 12 months and had just got his driving licence back. Then one day, he didn’t turn up for work.”
Fin’s death shocked his close-knit family and friends, and the wider Mackay community, and revealed a confronting truth: few Australians have heard of SUDEP, even among those living with epilepsy.
“Losing Finley has been devastating. It’s something you think about every day, constantly. I wake up thinking about it. So does my wife, Fin’s mum Vicki. There’s really no way to describe what it does to you.
“He was back playing sport and living life as he always had, so it was something nobody saw coming. Certainly, SUDEP was never mentioned to us at any point.”
Now, Greg and his family are sharing Fin’s story through Epilepsy Queensland, the organisation providing support for people and families impacted by this complex and often misunderstood neurological condition.
Their goal is to break the silence around SUDEP - around epilepsy - so that no-one has to struggle alone.
A hidden cause of death
SUDEP claims the lives of an estimated 300 Australians each year. Despite this, awareness remains low, and many families only learn of the risk after a tragedy occurs.
Sandi Rodiger, CEO of Epilepsy Queensland, says that needs to change.
“Too many families are blindsided by SUDEP because they simply don’t know it exists, and that’s one of the many problematic legacies of a condition that’s been hidden and stigmatised throughout history,” said Sandi.
“We still don’t know why SUDEP happens but, without scaremongering, it’s important to know that it can happen – it’s important that people and families impacted by epilepsy get the support, education and community they need to live well and know that they aren’t alone.”
A community keeping Fin’s memory alive
Every year since Fin’s death, his friends travel from across the country – and even overseas - for a charity day in his memory. To date, they’ve run three events and have raised an incredible $87,902 for Epilepsy Queensland.
“To be honest, I thought the event might go for a year or two and then peter out, but instead it’s getting bigger and bigger,” said Greg.
“That means the world. It means Fin hasn’t been forgotten.”
More than that, the loss of his ‘larrikin’ son – described as a ‘friend to many’ - has changed how Greg’s family lives.
“I suppose one of the positives, if you can call it that, is that I think we’ve all got a different outlook on life now. It’s not ‘we’re going to do something someday’ - if we want to do something, we do it now.”
No family should face epilepsy or loss alone. Learn more about SUDEP, epilepsy and how you can support families like Fin’s at www.epilepsyqueensland.com.auor or call 1300 852 853.
Three years after the sudden death of his 25-year-old son Finley from SUDEP, Mackay father Greg Smith is urging Australians to raise awareness about this little-known epilepsy risk and support affected families. Photos supplied