EDMONTON – Jordan Gagnon, like many five-year-old girls, has one dream: to learn to dance. And for the little girl’s mother, the time to learn is now, because she doesn’t know how much time her daughter has left.
“I didn’t have any time to waste anymore,” Christa Gagnon said. “There was no more procrastination. All of those things that she loves and wanted to do and that little girls should get to experience in life, if she didn’t do them now she may never do them.”
When Jordan was about two years old, her mom noticed she started to have trouble walking.
“She would kind of drag her toes a little bit and stumble and fall a lot. So we just thought there was something. We didn’t know exactly what,” Gagnon said.
Jordan’s preschool teacher recommended she see a neurologist, and from there she went to a geneticist. Jordan was eventually diagnosed with giant axonal neuropathy, a rare genetic disorder with no cure.
There are only three other children in Canada who have giant axonal neuropathy, which causes the nervous system to slowly cut off the signals that make the body move. In most children it’s diagnosed before the age of five and starts with symptoms in the legs. It will eventually affect the arms, eyes, ears, lungs and brain.
“Looking on the computer and realizing how terrible the end result of this was was hard. Very hard,” Gagnon said.
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Knowing she had no time left to waste, Gagnon enrolled Jordan in dance class.
“She loves dance class. She’s such a happy-go-lucky little girl,” Gagnon said.
“I like twirling,” Jordan added. “I like the songs.”
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Because Jordan struggles to walk and now uses a walker, Jordan’s teacher, Teri Knott, said she prepared modified movements to teach her. But she quickly learned that wasn’t necessary.
“When she came in on the first class she was so determined, she was so excited to dance, and didn’t want my help with anything,” Knott said. “She was so determined to do it on her own.”
As a mother, Gagnon said it’s hard to watch Jordan fall and not do the steps the same as the other dancers, but knows her daughter is having the time of her life.
“It hurts my heart because I know that one day she won’t be able to walk and so it’s bittersweet. I love to see her enjoying it and having fun but then in my brain I’m thinking about the future and all the things that won’t be,” she explained. “Every new regression is a hard step to take as a parent.”
Jordan has been accepted into a clinical trial at the National Institute of Health in Maryland for a new gene therapy that Gagnon is hopeful will restore Jordan’s function.
For now, Gagnon is savouring every moment she has with her little girl, watching closely as she takes to the barre to do what she loves: dance.
“She has no idea that this is happening to her so she’s just living life and enjoying every moment.”
A bottle drive to raise money for the family’s trip to Maryland will be held this weekend.
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