‘There’s no words for the pain’: Mum grieves son’s unexpected death from seizure

A mother has endured what no parent should ever have to, the loss of one of her children. Now she is speaking about how her son died, to help raise awareness of the cruel condition.

Tracy Weetra has never experienced pain like the day she lost her son Tyrone unexpectedly after he had a sudden seizure.

“Losing a child, there are no words for the pain,” the 41-year-old Kaurna Narrunga woman said.

“Any parent that has experienced what I have experienced … you just don’t have any words for it, the pain just never goes away.”

Tyrone Anthony Weetra was only 20 years old when he lost his life to ‘SUDEP’ — sudden unexpected death in epilepsy — in September 2023.

Diagnosed at 18 after experiencing his first seizure, his life was never the same.

“It was heartbreaking,” Ms Weetra said.

“It cuts really deep in your heart because sometimes you feel so helpless.”

Tyrone Weetra, who died in September 2023 after a seizure, with his mum Tracy. Picture: Supplied by family

Tyrone’s mum said her son’s epilepsy diagnosis felt like an “avalanche crushing (him)” and said her son was “very isolated in his own body”. Picture: Supplied by family

Prior to Tyrone’s passing his mum said his epilepsy diagnosis felt “like an avalanche crushing (him) — he felt very isolated in his own body”.

“Epilepsy affected Tyrone … it broke his heart because there were things he wanted to do being a First Nations man, he couldn’t do,” she said.

“He couldn’t drive a car … he wanted to get a job … he couldn’t work even if he wanted to because of the seizures he was having.

“He felt like he was drowning within himself … it changed him dramatically.”

Tyrone was unable to continue playing football, judo and boxing like he did in school.

“It was very hard for him and for myself and his whole family,” Ms Weetra said.

Although Ms Weetra said at times Tyrone was isolated, he found himself through music and he had a passion and talent for rapping.

Tyrone Weetra (L), with his brothers Joshua, Jayden, Jamile and Tyrell. Picture: Supplied by family

SUDEP kills 170 Australians a year. Picture: Supplied by family

Leading experts are calling for greater awareness of SUDEP — which kills 170 Australians a year — in a bid to save more Australian lives.

SUDEP occurs when an otherwise healthy person living with epilepsy dies suddenly and prematurely, with no identifiable cause of death.

Ms Weetra said she didn’t know about SUDEP before her son died of the condition but will now continue to speak about it and raise awareness.

“Tyrone’s legacy will live on,” she said.

Carol Ireland, CEO and managing director of Epilepsy Action Australia said she has met many families who have experienced the devastating impact of SUDEP who were not aware of the condition at the time.

“While researchers are currently investigating the causes of SUDEP, it’s important for Australians living with epilepsy and their families to understand the safety risks factors of the condition — every seizure can pose a risk,” she said.

A survey showed on average more than half of parent carers spend at least 100 hours per week dedicated to looking after their child living with severe epilepsy.

For Tyrone, Ms Weetra said he suffered with seizures often and in the 12 months leading up to his death, they were becoming more regular.

“Parent carer responsibilities when looking after a child with severe epilepsy is often a 24/7 role,” Ms Ireland said.

“This means parent carers have little to no time at all when it comes to work, and this can significantly add to the stress and financial burden of care.

“Not to mention the social and emotional impacts, as caring can be a socially isolating experience.”

Originally published as ‘There’s no words for the pain’: Mum grieves son’s unexpected death from seizure