Family refuses to live life under cloud

Seeks cure for kids like stricken son


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It was after 9 a.m. Friday when I arrived at a house in Linden Woods and knocked on the door.

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Hey there, time traveller!
This article was published 05/09/2009 (4955 days ago), so information in it may no longer be current.

It was after 9 a.m. Friday when I arrived at a house in Linden Woods and knocked on the door.

I wondered what it must have been like seven years ago, when Doug and Cindy Smith moved into their dream home, when their life seemed destined to be take a perfect path. If, that is, one’s idea of ideal approximates living in the suburbs, dad being a chartered accountant and mom being able to stay home with the two children.

A girl for her and a boy for him, as the song goes.

The stork brought Hayley first. And two years later, along came the perfect little boy to complete the perfect family. Except beautiful, happy little Brandon Smith wasn’t perfect because mum and dad weren’t either. Like many of us, Doug and Cindy each has a genetic flaw they didn’t know about. The trouble was, it’s the same gene.

That meant any children born to them stood a one-in-four chance of inheriting infantile Batten’s disease, a rare and fatal neurological disorder that affects nerve cells in the brain and progressively reverses physical and mental skills.

And Brandon was the one.

I didn’t have to wait long for the Smiths to answer the knock at the door. Doug and Cindy and daughter Hayley, now 10, were waiting.

Brandon, 8, was there, too, cradled like a baby in his father’s arms. The mere fact that he’s alive is a credit to his family’s tenacious focus on searching for, travelling to and getting Brandon the best care available. Brandon wasn’t supposed to live past five.

"We celebrate birthdays around here," Cindy said.

The Smiths gently advise me that they don’t talk about Brandon’s life expectancy around him. He can’t talk or walk or do anything for himself, but his parents know he understands.

They can just tell.

To really understand what’s happened here, you have to see how Brandon started life with such promise. Cindy opened a laptop computer and began playing video clips of Brandon as a normal, happy little baby boy. Smiling and laughing and taking his first wobbly steps. Sitting in a high chair stuffing his face with handfuls of chocolate cake. And sweetest of all, little Hayley, then about three, feeding her playful baby brother.

Then there was a family car trip to Minneapolis during that first happy year of Brandon’s little life when they heard him speak his first word.

"It was ‘Elmo,’ the Sesame Street character," Cindy recalled, laughing.

By the time Brandon went for his 18-month checkup, there wasn’t much laughter.

They could see Brandon physically regressing — not being able to hold his cup, almost walking into walls, then going back to crawling.

"Elmo" would be the first and last word Brandon spoke.

Cindy recalled the day the diagnosis was confirmed.

"We cried and cried," Cindy said.

That night her girlfriend called.

"She said, "You decide how you live your life. You decide if you want to live it under the sun or under the clouds. And how you decide to live your life will reflects how Hayley and Brandon and Doug lead theirs."

Cindy chose the sun.

She and Doug even chose the real sun four years ago when the Children’s Wish Foundation flew them to a resort in Jamaica and Brandon got to be held in the arms of Elmo.

They chose blue sky, too, when they decided that they would raise funds for a cure, something that researchers are getting closer to finding because of genetic breakthroughs. Free Press reporter Aldo Santin has helped with a series of stories about Brandon.

But life, like the weather, isn’t without its occasional cloudy day.

Recently Brandon was crying night and day for weeks. He was constipated and had acid reflux, but there was no way Brandon could tell them what was wrong.

It took time for Doug and Cindy and their doctor to figure it out and stop the crying.

But it started again whenever mom and dad went out together on a rare date night alone.

How, I wonder, do they keep going?

"We celebrate the little things," Cindy said. "Every time Brandon smiles or laughs, we run into the room."

Brandon’s big sister is a big help too.

The other day, she wrapped up a piece of chocolate for her mum and hand-wrote a message.

"Strength, hope and courage will get us through this."

Apparently, Hayley saw that in a greeting card. What Hayley said when I asked what it is like to be Brandon’s big sister was all her own, though.

"It’s awesome," she said. "It’s hard sometimes," she added. "But when I have to do something hard, I tell myself Brandon’s done harder things than that. So I can do that."

Which brings us to Brandon’s latest progress. He starts school at Linden Meadows later this month, where Hayley goes.

"He’s the most incredible little human being," Cindy said.

He is that, but no wonder.

That, no doubt, comes from his parents’ genes too.


Fund supports research

BRANDON’S family has set up a trust fund at Assiniboine Credit Union for research into a cure for Batten’s disease. Donations to A Fight For Brandon can be mailed to 100-5 Donald St., Winnipeg, R3L 2T4.

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