EDMONTON – At 18 years old, Amanda Renneberg was diagnosed with Friederich’s Ataxia, a rare, degenerative neuromuscular disorder.
However, years before her official diagnosis, Renneberg was a Justin Timberlake fan.
“He’s an inspiration,” she says. “I feel good when I listen to his music. I’ve been a fan since day one, since his ‘N Sync days.”
From the moment she wakes up to the moment she goes to bed, Renneberg listens to Timberlake music.
“I just try to take each day at a time and do what I can… My music gets me through a lot.”
Renneberg, now 27, says the prince of pop motivates her and helps her stay positive.
“It gets her through tough days,” explains Derek Jones, her boyfriend of 12 years. “She always has it on her iPod – 24 hours a day,” he adds with a grin.
“She rarely has any down days. She turns on her music and starts singing.”
Together, the couple drove to Vancouver to see Timberlake in concert.
“We drove all the way from here – 13 hours – to Vancouver to go see him and Jay Z,” says Renneberg.
“It was amazing… We’d do it again if we had the chance.”
“We try to do as much stuff now while everyone is still able,” adds Jones. “We don’t know what the illness will be like in five years or two years… so if we have an opportunity to do something that makes her happy or us happy we do it. No waiting around.”
Renneberg was thrilled when Timberlake added two Edmonton shows to his concert tour, and she bought tickets to both shows.
She’s also been using social media in the hopes she’ll get the chance to meet the singer.
“I just want to meet him because he’s my inspiration.”
What would Renneberg say if she finally got to meet Timberlake?
“That I really like his music and to keep doing what he’s doing -you inspire a lot of people.”
However, the campaign is serving another purpose: making more people aware of Friedreich’s Ataxia.
“I really hope to get awareness out for my condition,” says Renneberg.
The disease can impact a person’s ability to walk, speak, and can lead to heart disease and diabetes.
There is no known cure for the life-shortening condition.
“I was walking and I would fall for no reason,” Renneberg recalls. “It just slowly progressed from there.”
“I had to get an MRI and a spinal tap and finally I was diagnosed with a blood genetic test.”
“They told me Friedreich’s Ataxia – and I had no idea, so I went home and Googled it.”
She says the doctors told her within five years she’d likely be using a wheelchair.
“I just couldn’t believe that that was happening to me. I was fine.”
Renneberg has been using a wheelchair full-time for about a year; nine years after her diagnosis.
She hopes her story will help educate others.
“Just to know that there is such a disorder. Don’t judge people the way they walk, because maybe they have the same thing that I have.”
And, if the efforts result in the meeting of a lifetime, Jones says it couldn’t happen to a better person.
“She just deserves it. She’s a big fan. And she does show much for other people. Even for her birthday, all she wanted was a donation for the Humane Society. She’s got a big heart, and I would just love if it could happen for her.”