The spirit of Kid Courageous inspired many

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Doug Smith with Brandon, Cindy and Hayley in September. (WAYNE GLOWACKI / WINNIPEG FREE PRESS ARCHIVES)

If he had been a boxer, instead of merely a fighter, they would have called him Kid Courageous.

Not that he looked like a fighter.

He could never walk or talk, much less throw a punch.

But it's amazing the impact a kid -- a mere child -- can have on the people who knew him.

And even perhaps those who only knew his story.

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It's been nearly two months since I wrote about the eight-year-old Linden Woods boy who wasn't supposed to live beyond his fifth birthday.

Brandon Smith finally died on Sunday at home.

He died in the same place he first felt safe and comforted when he was born -- in his mother Cindy's arms.

On Monday, when I reached Brandon's father Doug Smith on the phone, I asked how they were doing.

"Not so well," he said. "But we'll be OK someday."

When I asked how Brandon's 10-year-old sister Hayley was doing, he suggested she was the one comforting them, telling them how Brandon was in a place where he was free now to play and run the way he never could.

"He's happy," Hayley told her parents. "We need to be happy for him."

Heartbreakingly, early in his life -- before his 18-month checkup and before a disease began to cruelly halt and then reclaim his early development -- Brandon appeared like a baby who would grow up to play like other little boys.

His family has photos of his big sister Hayley feeding him in his high chair and of Brandon smearing his face with gobs of chocolate cake.

They also have video of Brandon taking his wobbly first steps.

That was before he began bumping into walls that knocked him backwards, walls that became a metaphor for the rest of his life.

Brandon was born with infantile Batten's disease, a rare inherited neurological disorder that affects nerve cells in the brain and progressively reverses physical and mental skills.

Yet, throughout his brief life, the Smiths treated Brandon as a "normal" little boy, and talked to him as if he were.

For years, the family fought valiantly for the best help medical science could provide.

Hoping for a cure.

Believing in a cure.

"We thought we could beat it," Doug said. "It was just too late for him."

Clearly the Smiths are fighters, too.

For the last three weeks, the family knew Brandon was fading.

They knew he was dying.

The Smiths' focus and faith were so strong, though, that it didn't always look to them that it had to end this way.

In the end, with a treatment possibly around the corner for others, it wasn't Brandon's will that gave out.

It was his little body.

When we spoke Monday, Doug talked about what a fighter Brandon was.

Right to his last breath.

"He just kept going and going and going. Like Cindy said, 'All he knew was to constantly fight.' "

Doug wanted people to understand that. He also wanted everyone to know this: "How very thankful we are he came into our lives and how thankful we are for all those who did anything for us."

Then Doug quoted Cindy again.

"He taught us to dance in the rain. Life is not waiting for the storm to pass. It's learning to dance in the rain."

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As I was saying, Brandon never learned to walk or talk -- he never really grew that much -- and he was probably legally blind.

Yet he, and his little life, spoke to people in a profound way.

There was something about his spirit, the way Brandon battled to live, and the way his family fought for him, that inspired people who were privileged to meet the Smiths.

"He gave them hope and they gave him and us hope," Doug said.

The testament to that will come at the funeral service Wednesday at 2 p.m., when throngs of people who have been touched by the little fighter are expected to pack the United Church in Meadowood to comfort his family.

And celebrate the little life of Kid Courageous.

gordon.sinclair@freepress.mb.ca

Republished from the Winnipeg Free Press print edition November 3, 2009 B1