Alberta girl with ALS-like disorder to receive award for courage

Alberta girl with ALS-like disorder to be recognized for courage
WATCH ABOVE: Staff of Edmonton's Glenrose Rehabilitation Hospital are planning to honour a young Alberta girl with a Courage Award for her ability to inspire others. Su-Ling Goh explains.

Eight-year-old Jordan Gagnon recently learned to do wheelies in her wheelchair. Her face lights up every time she manages the trick. So does her mother’s.

“She is a light for everybody that meets her,” Christa Gagnon said with a smile.

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Staff of Edmonton’s Glenrose Rehabilitation Hospital agree. They are planning to honour Jordan as one of this year’s Courage Award recipients for her ability to inspire others.

Jordan has Giant Axonal Neuropathy, which her mother describes as “an ALS for kids.” ALS stands for Amyotrophic Lateral Sclerosis.

READ MORE: Alberta scientists make breakthrough in drug treatment for ALS

The rare, terminal disorder is slowly shutting down the girl’s nervous system.

By age two, she was dragging her feet. At five, she needed a walker. Now she relies on a wheelchair.

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“(The wheelchair) is a relief for her, because she’s a little bit more mobile, has to do a little bit less work,” Christa said. “I think it was a harder transition for us than for her.”

Jordan Gagnon has a rare, terminal condition. She will soon receive a Glenrose Courage Award.
Jordan Gagnon has a rare, terminal condition. She will soon receive a Glenrose Courage Award. Courtesy: Christa Gagnon

Glenrose physical therapist Georgia Diduck helps Jordan stand up and walk with leg braces and a walker during their sessions. She’s trying to keep the Grade 4 student as mobile as possible.

“When given a condition that is progressive, it can be really disheartening, really depressing,” said Diduck. “With Jordan, she takes it all in stride.”

“She really, to me, is the definition of courage.”

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Diduck says most children need to be entertained during therapies. But Jordan supplies her own music by bursting into song.

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“When Jordan is the one that brings out the joy and brings out the fun… it’s really refreshing,” said Diduck.

“We know that it’s really coming from her heart.”

READ MORE: Albertans who overcame health challenges and made a difference

Jordan has undergone gene therapy in Washington, D.C. She’s also had a surgery to place rods in her spine. Now she’s enrolled in a University of Alberta clinical trial to create a drug specific for her body.

Though her daughter’s future looks difficult, Christa says Jordan’s strength lifts her entire family.

“She’s a pretty positive kid. There’s not much that phases her. Not much at all.”

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Jordan will be presented with her Glenrose Courage Award at a ceremony in November.