Lucy Haines/ For Metro Amanda Renneberg has been living with Friedreich's Ataxia, a rare neuromuscular disorder, for 10 years.  She said it's likely her last chance to see and maybe meet the pop star.

Amanda Renneberg is holding out, hoping she’ll meet pop star Justin Timberlake when he brings his 20/20 Experience World Tour to Edmonton next week, but if it doesn’t happen, it won’t be for lack of trying.

The 27 year-old Sherwood Park woman, who has been living with Friedreich’s Ataxia, a rare and degenerative disease affecting the nervous system, has tickets to both JT shows here, plus help from local media who have been sharing Renneberg’s story and calling on the musician to make a dream come true.

“I tried to contact the tour manager through the JT website, but I haven’t heard back,” said Renneberg, who has also garnered some 5,600 likes on Facebook and over 100 Twitter followers, all sending good vibes that the star will make time while in the city to meet Renneberg. “It’s OK if I don’t meet him—I  hope to raise awareness for this rare condition, and it has felt great to get support, even from strangers online.”

“Hearing JT’s music is inspiring. It makes me feel better if I’m having a bad day,” Renneberg said. “ I’m trying not to think about my life being cut short.  I just want to live in the moment.”

Diagnosed at 18, Renneberg is now wheelchair bound and can’t work or drive due to chronic fatigue.  But boyfriend Derek Jones describes Renneberg as one who “keeps hoping and trying for her dreams.”

Scott Rattray, manager of services Alberta for Muscular Dystrophy Canada, said while the disease isn’t curable, symptoms can be managed.

 

 

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