Joe Philion continues to defy the odds.

Twenty-three years after he raced back into his burning Orillia-area home to search for his mom and suffered burns to 90 per cent of his body, Philion languishes in a bed at a Vancouver Island old folks home, praying each night that he won’t awake in the morning.

It has been a long, torturous journey for the boy with a big smile who is now an immobile, bloated 37-year-old man whose scarred fingers are twisted into angry fists and has stumps where his feet were burned away so long ago. His skin falls off in chunks, he has hepatitis C and has lost all his teeth.

In June last year, I met with Linda Hawkins, Philion’s mother, in Courtenay, B.C., on the day she was diagnosed with lung cancer. She said she didn’t want radiation or chemotherapy and hoped to find a cure through natural or spiritual paths.

She was still reeling from the death the previous fall of Danny, her youngest son, after he and a friend experimented with some of Philion’s medications.

On June 14 this year, cancer killed Hawkins, leaving Philion’s care to her second husband of 25 years, Mike Hawkins.

It’s been tough for the 52-year-old man, who has battled depression and had to give up his job as a taxi driver to deal with medical issues of his own.

For much of his life, he’s been defined by the struggles of his wife and her son.

“I don’t know who I really am,” Hawkins said on the line from Courtenay. “Everything has been geared to Joe and Linda for so long, for so many years.

“I’m empty, I’m empty. It so hard right now you wouldn’t believe it.”

His wife’s death has left a huge hole in his life, as have the many friends who have stopped calling, stopped dropping by the little home he shared with her.

“I think it scares people, it scares the hell out of them,” he said. “I don’t think they know what to say.”

Philion was just 14 when the family’s home in Cumberland Beach, a stone’s throw off Highway 11 north of Orillia, caught fire in March 1988. He got his brother out, then ran back into the flames when he couldn’t find his mother, who had left minutes earlier to drive her husband to work.

Trapped in the smoke, Philion burst through a window in a ball of fire, writhing in agony in the glass-covered snow.

He was hailed as a young hero, a title he never sought and one that has been an albatross for more than two decades.

He squandered as much as was given to him over the years, from the well-equipped “house of love” the Orillia community built for him, to the thousands of dollars set aside for its upkeep.

Last year, he spoke of his mortality, just as his mother was facing her own.

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“I know I’m going soon,” he said. “My biggest fear is leaving her behind, not knowing how she’s going to be able to handle it.

“My little brother is gone. A parent’s not supposed to bury their child. But she’s a tough woman. I know somehow she’ll get through.”

To his dismay, Philion survived his mother and awakes each day without hope, Mike Hawkins said.

“Joe’s hanging on, I don’t know how,” he said. “Nobody knows how he keeps going. He’s a pretty strong kid.

“But it’s so lonely for him. Other than me, hardly anyone ever comes to visit now. But he’s strong, he’s got a lot of faith.

“He said the other day that he doesn’t want to wake up any more. When he goes to sleep at night, he hopes he won’t wake up.

“I don’t know how he does it, day after day in the same bed.”

For Hawkins, all that’s left is his promise to Linda, to keep watch over his stepson as long as he lives.

“There’s only love there, that’s all there is,” he said.

“It’s all that ever kept us going.”