Should Steve Fonyo's Order of Canada be returned? Here's what the cancer survivor's family is saying after his death

The grieving family of Steve Fonyo, who died Friday, is calling for his Order of Canada membership to be restored.

“I don’t think they should have ever taken that away from him,” said Fonyo’s sister, Suzanne Main.

Fonyo survived childhood cancer and then inspired a nation when he ran across Canada on an artificial leg in the mid-1980s.

“He loved the crowds when he was running and he would stop and talk to anybody. Very proud of him,” said Main.

“I will only remember him as a hero.”

Fonyo raised millions for cancer research. He was awarded the Order of Canada in 1985. He was just 19 at the time.

But he later fell from grace after facing criminal convictions, even spending time in jail. His Order of Canada was revoked in 2010.

“He did such a great thing… Why did they take that back? So he had some issues, nobody’s perfect,” Main told CTV News.

Fonyo faced many personal battles during his life.

In 2015, he was beaten so badly during a home invasion, he spent a month in a coma. A traumatic head injury left his speech slurred.

“It’s not right,” an emotional Fonyo told CTV News at the time. “They took my life away.”

His sister says he never fully recovered from the vicious attack.

“His speech never (fully) came back,” she said.

“He was always still looking for words and sometimes it would be hard to understand what he was saying.”

Steve Fonyo's sister, Suzanne Main, speaks to CTV News.

Fonyo moved to Powell River and got himself back on track, according to family.

And they say he also found happiness.

“His personality was big and he made me laugh every day,” said Lisa Marie Herbert, Fonyo’s long-time girlfriend.

(Photo courtesy of Lisa Marie Herbert)

His sister said he remained close with their mother who is in a care home.

“He would call her every week and talk to her,” said Main.

Their last phone visit was just a few days before his death.

On Friday, Fonyo was in Burnaby for a medical appointment. Herbert says when she returned to their hotel, she found him collapsed.

“I could hear him breathing really strange and I turned the lights on and he was on the floor, convulsing,” she said.

It’s not yet known why Fonyo died, but his girlfriend believes he may have had a seizure. She said he was not taking anti-seizure medication that had been prescribed after he was beaten.

The family is waiting to hear more from the coroner.

(Photo courtesy of Lisa Marie Herbert)

Meanwhile, online tributes to Fonyo are pouring in, many agreeing with the family that his Order of Canada should not have been revoked.

A service to remember Fonyo will take place in Vernon.

A date has not yet been set.

(Photo supplied by Lisa Marie Herbert)