When Anny Marrett got a phone call on a Monday morning that her son George hadn't shown up to work she immediately knew something was wrong.
"He loved that job, it was his dream job," she said.
The Sydney 29-year-old had died in his sleep at home from a condition that even as a GP Dr Marrett had never heard of, news.com.au reported.
George had suffered since he was 14 from epilepsy, which was being managed with medication.
Eight years ago his parents found out he had died from sudden unexpected death in epilepsy (SUDEP), when a person with epilepsy dies suddenly and prematurely, and no reason for death is found.
There is very little information or awareness of SUDEP, yet more people die from it in Australia than from sudden infant death syndrome (SIDS).
"I'm a GP but I hadn't heard of the condition, I'm ashamed to say," Dr Marrett said.
"There's more awareness about SIDS."
Dr Marrett said her son had just scored his dream job at Citibank, which involved long hours.
"He knew he wasn't sleeping that well," she said.
"He'd been at a party and he'd come home late; he'd had a few drinks. He might not have taken his medication dose before the party.
"A friend called him around lunch to ask him for golf but he turned it down because he was too tired. We think a combination of lack of sleep, missing tablets and having a few drinks possibly contributed to his death."
George's two flatmates were away for the weekend, which meant nobody knew until he didn't show up for work.
He was two months short of his 30th birthday.
It's estimated there are 300 epilepsy-related deaths each year in Australia with up to half as a result of SUDEP.
Epilepsy Action Australia chief executive Carol Ireland said there may be obvious signs a seizure had happened, though not always.
"In most cases, the person is found to have passed away in bed while they were sleeping," she said.
"The common thing I hear from grieving families is, 'Why didn't we know about the risks of this?'
"Reducing risk factors associated with SUDEP and epilepsy mortality can save lives and give patients with epilepsy peace of mind. The conversation about risk between doctor and patients with epilepsy needs to be accepted as routine just as it is with other chronic conditions."
To improve knowledge and awareness of SUDEP and epilepsy mortality risk factors with clinicians and people living with epilepsy, Epilepsy Action Australia is launching the SUDEP and Seizure Safety Checklist.
The checklist is the first clinical tool in Australia to assist neurologists, GPs and other health practitioners to discuss and monitor risk factors with their patients aged over 16.
The checklist is a free, easy-to-use, evidence-based tool that can be downloaded through the Epilepsy Action Australia website by any health practitioner registered with the Australian Health Practitioner Regulation Agency.