Family‘s plight after teen dies in sleep

Judah Lehtonen and his family, from Hervey Bay, had never heard of SUDEP – Sudden Unexpected Death in Epilepsy – since his epilepsy diagnosis in 2018.

He fell asleep listening to an audiobook in January this year, and never woke up.

His mother, Louise, told 7 NEWS if her son had been aware of the risk, he would have done more to reduce the chance of it happening.

“My son was 21. He thought he was bulletproof. He was otherwise pretty healthy,” she said.

“And there are things you can do to reduce the risks – not drinking alcohol, good sleeping habits, limited time on devices, compliance with medications.

“We don’t really know exactly what happened … he stopped breathing and his heart stopped beating.

“That’s what SUDEP is. When someone (with epilepsy) dies of an unknown cause.”

According to the family, they were only told after their son’s death that SUDEP was one of the leading causes of death in epilepsy sufferers.

Father Michael said they had been to two neurologists and no one had ever mentioned the condition.

“This is the one that generally takes them,” he said.

According to Epilepsy Queensland, about one in 1000 sufferers die from SUDEP.

“SUDEP is a baffling condition with little known about the underlying causes,” a EQ fact sheet says.

“There may be no single cause but a combination of things occurring at once … It is impossible to predict who may be affected.

“There is a great need for further research on SUDEP to increase understanding and educate people about SUDEP.”

Like Mr Lehtonen, 20-year-old Anna Fairleigh and 22-year-old Maddie Gill also died from SUDEP, with their families still in the dark.

They told the Courier Mail last month that they were determined to find answers.

Chris Dougherty from Epilepsy Queensland told 7 News admitted more research was needed into the condition.

“We don’t know enough about what causes it or why it affects a particular person,” he said.