But then, one morning last year, he died.

Charley and Harry, who died aged 35, had been together for 11 years.

Charley first noticed her partner had a scar on his head. He had epilepsy, a brain condition that causes seizures.

Charley managed her husband's sleep, hydration, stress and medication; setting alarms, recording episodes and scheduling appointments.

"Here I am thinking I've done absolutely everything, but I've never heard of the one acronym that could have changed everything," she said.

Charley only learned of SUDEP - Sudden Unexplained Death in Epilepsy - when she read the coroner's report into Harrison's death.

"I had no idea what SUDEP was, ever. It was never brought up ... not one GP, not one neurologist, not one specialist," she said.

An Australian dies from SUDEP nearly every day, ACT Epilepsy chief executive Fiona Allardyce said.

When someone with epilepsy dies, usually alone, and doctors cannot find an alternative reason for the death, they presume it was because of epilepsy.

"Most people who are in this situation haven't heard of SUDEP until it's too late," Ms Allardyce said.

Charley's house, which she shares with sons Madden was and Kaidyn, brims with photos and mementos of Harry, a keen BMX rider. Pictures fill a bookshelf and line walls, and a Christmas tree has a bauble dedicated to Harry front and centre.

When the couple got together, Charley was already mum to a three-month-old and 19-month-old.

"[He] had this smile that was contagious," Charley remembers.

"He laughed about anything, really, was just really laid back and chilled."

Harry, who usually had a loud, jerking seizure about every six weeks, was not due for one.

His death on a February morning last year looms large in Charley's memory.

Charley went to wake her husband up for breakfast and "as soon as I got to the door I knew something wasn't right", she said.

"I just felt a real sense of emptiness, that sense of everything just felt really cold ... soon as I went to his side of the bed, I knew that he had already passed," Charley said.

The coroner's report noted Harry had a bite mark on his tongue, suggesting he'd had a seizure.

"It's hard to hear that someone that you have done absolutely everything for, tried absolutely everything in 11 years, and one thing you should have known about, you had no idea," Charley said.

"He should have been able to experience another 35 Christmases, another 35 birthdays, another 35 anniversaries.

"If I can help one person not have to go to the same pain, then absolutely I will."

Everyone with epilepsy should understand they can die from it, Ms Allardyce said.

"The best way to not have SUDEP is to take control of your seizures," she said.

This might mean taking medication on time, reducing triggers, stress or alcohol, or increasing sleep.

IN OTHER NEWS:

Charley chooses to focus on the best of Harry's life.

"He got 11 years of being a father figure," she said.

"He got 35 years of life and he got 35 years of friendship and as hard as it is, they're the moments that you have to keep holding onto."