Every night Stu Place puts his son Will to bed knowing the four-year-old could die.
"You live with this anticipatory grief. It's a strange concept," he told AAP.
"You're almost mourning the potential loss of a child when nothing has happened yet."
The condition that could take Will's life is termed SUDEP - Sudden Unexpected Death in Epilepsy.
"You live with hyper vigilance. A heightened alertness," Mr Place said.
"Exhaustion is one word that probably neatly describes how it feels."
Will was 18 months old when he was diagnosed with the rare, genetic epilepsy, which puts him at higher risk of Sudden Unexpected Death in Epilepsy.
At the time he was having 150 seizures a day.
"He would drop to the ground and his body would shake for five to 10 seconds," Mr Place said.
"Then he would get up like nothing happened. But that would happen every 10 minutes."
Will is non-verbal and also has cognitive impairment, autism, sleep, movement and behaviour disorders.
In Australia, 170 people die every year from the condition.
It occurs when an otherwise healthy person living with epilepsy dies suddenly and prematurely with no identifiable cause of death.
People at the highest risk are those who experience nocturnal or "frequent, convulsive" seizures and don't take their medication when prescribed, Epilepsy Action Australia's Carol Ireland said.
While 70 per cent of those with epilepsy can control their seizures with medication, 30 per cent have drug resistant seizures.
Experts are raising awareness about the risks, saying two out of three cases could be prevented through better seizure control.
"Some of the age groups more affected are young people, and people in their 20s and 30s," Ms Ireland said.
"They're people who just forget to take their medication, they're socialising a lot, they're not getting enough sleep.
"But those risks can be mitigated ... and so it might be possible to prevent the deaths of two out of three people we lose."
Experts hope raising awareness will increase access to specialist care and screening for sudden unexpected death in epilepsy (SUDEP) risks, as well as innovative treatments to reduce seizures.
"We do not understand why SUDEP occurs, this is the next important step in research ... but need to invest more resources to solve this terrible problem," University of Melbourne's Professor Ingrid Scheffer said.
Despite the challenges Will faces everyday, Mr Place said he was a happy boy with lots of energy.
"Will's favourite things are music. He dances to anything with a beat to it, he loves other kids, he loves jumping on the trampoline, climbing anything in sight," he said.
But for now, Mr Place and his wife Vicki feel their ability to protect their child is largely taken out of their hands.
"We live with anxiety and fear, constant worry, especially at night time or when you can't monitor them closely, like at day care," he said.
"You feel helpless, because it's so difficult to predict and prevent."
National Epilepsy Line 1300 37 45 37
National Epilepsy Support Service 1300 761 487
