NBC15 News features Variety

Posted on Wed Mar 04 2015

By Kristin Mazur

Most teens ask for a car when they turn 16. But for Grace Kenitz, making it to 16 is a gift in itself.

"I'm always so filled with awe because she's not supposed to be here” says Grace's mom, Shannon.

Grace has a rare genetic disorder, mitochondrial cytochrome c reductase deficiency. She was on life support as a toddler and her chances of survival were low. But, Grace beats the odds, thanks to an alternative therapy, hyperbaric oxygen therapy, coupled with a lot of hope.

"Her vision is completely restored. She walks, she runs, she swings on her own, she swims on her own” Shannon tells NBC 15.

It's evident Wednesday night as Grace enjoys herself in an indoor pool, surrounded by her friends from Memorial High School to celebrate her birthday. She was also surrounded by her new adaptive bike, a bike made possible thanks to Variety the Children's Charity of Wisconsin and funding from Eppstein Uhen Architects.

"It's a direct drive, so whenever her feet are moving the bike is moving. It also has a rear steer, so whoever is with her can steer from the rear” says Brent Emery, co-owner of Emerys Cycling and Fitness, who is teaching Grace how to operate the bike. “It's just amazing what she's done this afternoon."

Shannon says she's filled with an immense amount of joy to see her daughter on the bike and even more, seeing her make it to another birthday.

"Everyday I wake up and I look over at her and I just feel so incredibly lucky that I have one more day with her” says Shannon.

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