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Madison girl with rare disease to be featured on TV series

By: Madeline Anderson Email
By: Madeline Anderson Email

Posted: Friday, Sept. 13, 2013 --- 9:20 p.m.

Most of us don't think twice when we see a child on the playground swinging. But if you knew what Grace Kenitz has been through, you'd be amazed she's even alive to experience it.

"When she was three years old, on a good day, she only weighed about 10-15 lbs. She was blind, had a feeding tube, basically was in a vegetative state. And most importantly, to me as a mom, my daughter had absolutely no idea that I was her mom," said Shannon Kenitz.

Kenitz's daughter, Grace was diagnosed with a mitochondrial disease so rare, she's only one of five children in the world who has it, and the only one who's lived past the age of five.

When doctors told Kenitz there was nothing they could do to save Grace, she searched for alternative remedies, and came across Hyperbaric Oxygen Therapy.

"I didn't know anything about it but I needed to try it so I could let Grace go and it totally saved our life," she said. "Grace started to move her fingers, she started to lift up her head, and into the years that followed, she got out of her wheelchair and started walking. She's no longer blind."

HBOT patients go inside a chamber that forces Oxygen into their cells to repair ones that have become damaged. Grace has a portable one at her house that she uses daily.

"The thing that drew us to the story was that Grace's family took the solution into their own hands," said Chris Lofft. "When western medicine, when doctors said there was nothing that could be done, she's probably going to die, they said no."

Grace's resilience and her mom's intuition caught the eye of Lofft, the executive producer of the TV series "Natural Medicine Saved My Life." An entire episode will be dedicated to sharing Grace's story on the health and wellness network, Veria Living.

Kenitz hopes the episode will inspire people watching not to give up hope. "Because you know, when you don't have hope, things aren't possible. But if you have hope, then anything is possible. And my daughter is a true testament to that and when you don't give up hope what can happen."

The series is so new, it doesn't have a start date yet, so producers aren't sure when Grace's episode will air.


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