Every night Stu Place puts his son Will to bed knowing the four-year-old could die. or signup to continue reading "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." Will has what experts have termed . "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.
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 contro.