CTE North Queensland: Sarah Willey opens up on husband Steve’s fight against brain disease

A brave North Queensland mother of two young boys is speaking out about the dangers of CTE as her husband, a former avid sportsman, fights a losing battle against the fatal brain disease.

Cameron Bates

3 min read

September 4, 2024 - 5:00AM

Townsville Bulletin

Townsville man Steve Willey, formerly of Ingham and Mount Isa, with boys George and Tom. Mr Willey, a former avid rugby league player, amateur boxer and dirt-bike rider, is battling aggressive degenerative chronic traumatic encephalopathy (CTE) in hopes of seeing both children, aged two and four, start school. Picture: Supplied

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A brave North Queensland mother of two young boys is speaking out about the dangers of CTE as her husband, a former avid sportsman, fights a losing battle against the fatal brain disease.

Townsville woman Sarah Willey said husband Steve, 50, had only been recently diagnosed with aggressive degenerative chronic traumatic encephalopathy and was fighting to stay alive in the hope of seeing both children, aged two and four, start school.

Mrs Willey, a senior government employee, said she noticed “something wrong” about her husband in March last year? after the family had moved back to Townsville from Mount Isa where her husband ran a yard and roof maintenance business.

“He kept telling me, ‘I think I’ve got Alzheimer’s, I can’t think, I don’t know what’s going on’,” she said.

“And he’d tried four different antidepressants to help with what we thought at the time was depression and none of them worked.”

Sarah and Steve Willey with boys George and Tom enjoying time as a family. Mr Willey, a former non-professional athlete, is batting chronic traumatic encephalopathy (CTE). Picture: Supplied

Mrs Willey said after a protracted and costly series of medical examinations and procedures, two senior doctors from Townsville University Hospital and Health Service diagnosed likely CTE due to a number of key symptoms.

“He had really chronic sleep disturbance, chronic fatigue, he had cognition issues that came out of nowhere – this was a man who ran his business and then could barely function cognitively,” she said.

“He had poor memory, really roller-coaster moods like up, down; he’d go from really emotional and crying at nothing and then he would just blow-up.”

She also revealed that Steve had made an unsuccessful suicide attempt out of the blue, comparing her husband’s case to that of rugby league player and North Queensland Cowboys coach Paul Green who tragically took his own life in 2022.

Mrs Willey said her husband was a “lad” from Ingham, where he enjoyed living a rural North Queensland life, including playing “hard bush rugby league”, boxing training and dirt-bike riding, including the odd spill or two.

She said she had seen the reports about CTE in the media “and never thought this would be the diagnosis” from consultant psychiatrist and neuropsychiatrist Dr Omer Shareef and Professor Kunwarjit Sangla, clinical director of endocrinology and a board member at THHS.

“Our boys get more time with their dad because of these doctors and the THHS staff involved in Steve’s care recently,” she said.

“My goal is just so he can see his kids start school, if he can reach that milestone, then that will be lovely.”

An autopsy conducted after the shock death of former North Queensland Cowboys coach Paul Green revealed a severe form of CTE. Picture: Jorja Brinums

Mrs Willey said he husband was currently in the care of his parents and the National Disability Insurance Scheme (NDIS) Monday to Friday, and returned to the family on weekends.

She said Steve was now a part of a research group Circle CTE under highly regarded Sydney neurologist Dr Rowena Mobb and was taking medication for advanced dementia, which was also having a positive effect.

“He’s far more settled but he fatigues very easily, like his cognitive awareness is very depleted, he struggles to understand complex and even some day-to-day things, so I now help him with his decision-making.”

Rugby league legend Wally Lewis addresses the National Press Club in Canberra in April this year on "living with probably CTE and my hopes for change". Picture: Martin Ollman

Mrs Willey said she was speaking out to raise awareness about the potential dangers of CTE to even non-professional athletes.

“There’s no way I want to change sport or eliminate sport, but it’s just around the knowledge and the education: this could be you, you could be Steve if you don’t follow the concussion guidelines, if they are saying take a break after you’ve had a concussion, take a break,” she said.

“I can tell you now, when he got a concussion when he was younger, he would have gone out and played football and trained that very week, or he would have got on a motorbike and fallen off.”