Queensland family plead for more research after son dies in sleep from 'baffling' condition

Hervey Bay man Judah Lehtonen died in January.
Hervey Bay man Judah Lehtonen died in January. Photo credit: Facebook

A Queensland family wants more awareness about a deadly condition affecting people with epilepsy after their son died in his sleep. 

Hervey Bay man Judah Lehtonen died in January from sudden unexpected death in epilepsy (SUDEP). The 21-year-old fell asleep while listening to an audiobook and never woke up. 

Now, five months later, his family is calling for more research into the condition. 

"We don't really know exactly what happened but he stopped breathing and his heart stopped beating," his mother Louise Lehtonen 7NEWS.

Louise says Judah wasn't told about the condition when he was diagnosed with epilepsy in 2018. She said if he had been told, it could have saved his life. 

"If people were aware of SUDEP, people would take their condition more seriously. My son was 21. He thought he was bulletproof. He was otherwise pretty healthy," she told 7NEWS. 

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

People with epilepsy have a one in 1000 risk of SUDEP each year in Australia. The condition is rarer in children, with only one in 45,000 young people dying from it each year. Most cases occur during or right after a seizure. 

In a fact sheet seen by The Australian, Epilepsy Queensland said there is a "great need" for further research into the condition. 

"SUDEP is a baffling condition with little known about the underlying causes," it reads.

"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."