Every night, Stu Place puts his son Will to bed, knowing the four-year-old could die.
“You live with this anticipatory sadness. It’s a strange concept,” he told AAP.
“You’re almost mourning the possible loss of a child, even though nothing has happened yet.”
The condition that could kill Will is called SUDEP: Sudden Unexpected Death in Epilepsy.
‘You live with hypervigilance. Increased alertness,” Mr. Place said.
“Exhaustion is a word that probably describes what it feels like.”
Will was 18 months old when he was diagnosed with the rare genetic epilepsy, which puts him at greater risk of sudden, unexpected death from epilepsy.
At the time he was having 150 seizures a day. “He fell to the ground and his body shook for five to 10 seconds,” Mr Place said.
Matt Place and son Will Place, 4, diagnosed with Sudden Unexpected Death from Epilepsy
Will was 18 months old when he was diagnosed with the rare, genetic epilepsy, which puts him at greater risk of sudden, unexpected death from epilepsy
‘Then he got up as if nothing had happened. But that happened every ten minutes.’
Will is non-verbal and also has cognitive disorders, autism, sleep, movement and behavioral disorders.
In Australia, 170 people die from the condition every year.
It occurs when an otherwise healthy person with epilepsy dies suddenly and prematurely without an identifiable cause of death.
People at greatest risk are those who experience nocturnal or “frequent, convulsive” seizures and don’t take their medications when prescribed, says Carol Ireland of Epilepsy Action Australia.
While 70 percent of people with epilepsy can control their seizures with medications, 30 percent have drug-resistant seizures.
Experts are raising awareness of the risks and say two out of three cases could be prevented through better seizure control.
“Some of the age groups most affected are young people and people in their 20s and 30s,” Ms Ireland said.
‘These are people who simply forget to take their medication, they spend a lot of time together, they don’t get enough sleep.
“But those risks can be reduced… and so it could be possible to prevent the deaths of two out of every three people we lose.” Experts hope that 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 don’t understand why SUDEP is happening, this is the next important step in research… but we need to invest more resources to solve this terrible problem,” Professor Ingrid from the University of Melbourne said, Scheffer said.
Despite the challenges Will faces every day, Mr Place said he was a happy boy with lots of energy.
In Australia, 170 people die from the condition every year
“Will’s favorite things are music. “He dances to anything with a rhythm, he loves other kids, he loves to jump on the trampoline and climb anything that’s around,” he said. But for now, Mr. Place and his wife, Vicki, feel their ability to protect their child has been largely taken out of their hands.
“We live with fear and anxiety, constant worry, especially at night or when you can’t keep a close eye on them, like at daycare,” he said.
‘You feel helpless because it is so difficult to predict and prevent.’
National Epilepsy Line 1300 37 45 37
National Epilepsy Support Service 1300 761 487