Nfld. & Labrador

When his legs stopped working, he tried everything — except giving up

When Daniel Downey was 12, he lost the use of his legs, without explanation. Then he had an unexpected lucky break.

Daniel Downey went from using a wheelchair, without knowing why, to becoming a gym regular

A broken elbow ended up being Daniel Downey's catalyst for regaining his mobility. (Provided by Daniel Downey)

The benefits of an active lifestyle are well known: several studies have shown that exercising outdoors can improve short-term memory, vision and ability to focus, as well as decreasing stress levels and blood pressure, and helping with anxiety and depression.

Despite all that, some of us need a kick in the pants to get up and go out in the increasingly warm weather. 

Newfoundland-born, Nova Scotia-based Daniel Downey is that kick in the pants personified. But his struggle to get moving was much more difficult than finding the motivation to go outside.

Instead, it was about regaining the use of his legs.

'No one ever saw me as being smaller'

Downey has spondyloepiphyseal-dysplasia (SED), a rare condition that affects bone growth and results in skeletal abnormalities, short stature or dwarfism, and vision and hearing problems.

He was born with the disorder, but it took years for him and his family to find that out. His condition, and the shorter height it led to, didn't prevent him from having an average childhood.

A younger Downey, left, with a friend. (Provided by Daniel Downey)

Downey was able to keep up with his taller peers until he reached junior high. When he was about to enter Grade 7, his condition became more evident, he said.

"No one ever saw me as being smaller. No one ever gave put that into context when we had any plans, or when we were doing anything," he said.

Though he jokes about it now, Downey says his younger years were sometimes tough — for example, when he began to notice that his average-height peers had advantages in "superficial areas, dating in particular."

"I thought, 'Well, crap, now I have to be funny, so people like me,'" Downey said, laughing.

An overnight change

Crafting the perfect joke to impress potential partners soon became the least of Downey's worries. In Grade 7, at age 12, he lost the use of both legs — unexpectedly, and overnight.

Downey has come a long way from the night he woke up, unable to move his legs.

Downey returned from a badminton tournament, and went to bed excited for the next day's match. He soon woke up screaming, unable to move his legs. 

When the pain became unbearable, his family brought him to his doctor. But they couldn't figure out what was causing the problem. After two days, he regained his mobility and went back to school, bummed about missing the badminton game.

Three weeks later, one leg started to get stiff. This was not unusual on its own, Downey said, given his skeletal anomalies. Over the following hours, however, he again lost the use of his legs.

If there was an answer for what had happened, why I was now in a wheelchair, maybe I would have been able to accept it.- Daniel Downey

At the hospital, the preteen was put through "every test imaginable," he said. But the doctors still had to tell Downey's mother that they didn't know what was happening, or why.

"That was the hardest part, because if there was an answer for what had happened, why I was now in a wheelchair, maybe I would have been able to accept it."

A lucky break

Determined to walk again, Downey underwent years of intense physiotherapy, stretching, strengthening exercises, swimming and bike riding, occasionally travelling in hopes of finding an answer to the ongoing question of his mobility issues.

He found that answer himself when he shattered his elbow.

He couldn't use crutches or his wheelchair while wearing a cast, so Downey had to find new ways to be mobile. He learned that he could put his hand on his knee to stabilize himself, and doing that, he started shuffling around.

"That was just the beginning," he said. 

"I was off and running from there."

Amazed by his recovery, Downey's doctors pointed out that he'd been scheduled to have hip surgery just two weeks after he broke his arm. If he had had the hip surgery as scheduled, he would not have been as mobile post-op as he was before the elbow injury.

With his mobility regained, Downey has become a regular at his gym. In fact, his friends often ask him for fitness advice. (Provided by Daniel Downey)

Now 30, Downey has been wheelchair-free for 14 years.

He's a regular at his gym, often working out with friends who turn to him for advice on physical fitness. He joked that he creates safe spaces for newbie gymgoers, by "being the bigger elephant in the room by being the smaller guy."

Just as anyone would, Downey said he had tough days during his struggles to regain his mobility.

"But when it came down to giving up, that was never really an option."

Read more from CBC Newfoundland and Labrador


Wendy Rose is a freelance journalist based in St. John's, with a focus on local arts and entertainment for the past six years.


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