Magna girl with debilitating genetic condition carries on with ‘sass’Feb 23, 2022 08:04PM ● By Darrell Kirby
Tori Gardner, 7, of Magna suffers from a rare genetic muscle disorder known as reducing body myopathy. (Photo courtesy Liz Gardner)
By Darrell Kirby | [email protected]
She is one of only five people in the world known to have it.
And she has so far defied the odds that come with it.
Tori Gardner suffers from reducing body myopathy. RBM is a rare muscle disorder that causes progressive muscle weakness that can gradually rob its victims of nearly all bodily functions and eventually life itself.
Tori, whose parents John and Liz and two siblings live in Magna, showed early signs of the condition at birth and it has taken over her ability to do simple things like walk, talk, eat, breathe and many activities that other 7-year-olds take for granted. “She’s the most severe case on record,” said mother Liz.
“It’s amputation of her FHL1 gene,” is how Mrs. Gardner described RBM. “There are several myopathies that are caused by that gene. It just depends on where the mutation lies.”
“It’s pretty quick in its progression,” she added.
Tori is now confined to a bed and a wheelchair at a long-term care facility in Riverton, but the young girl has already been VicTORIous, as she is referred to on Facebook. “We were told she probably wouldn’t live to be one, and she did,” Liz said. Same thing for reaching age two. “We were told multiple times that we were more likely to hit the mega millions (lottery jackpot) than we were to see Tori’s fifth birthday.”
Researchers have made great progress but haven’t yet fully figured out reducing body myopathy, let alone a cure for it. Through various connections, someone with Quick Quack Car Wash got word of Tori’s situation. That led to a three-hour fundraiser at the new West Valley City location on Jan. 31 to help further the study of the disorder. Proceeds from customers getting their cars washed were donated to the cause—$7,500. “The community really came out,” said manager Bailey Dunlap.
Despite her physical limitations, Tori’s personality is typical of a 7-year-old girl. “She is sassy—a little sass queen,” her mom said. Tori is in first grade and doing well. Teachers come to her because of her condition.
Occasional rough days aside, “Overall, she’s pretty happy,” her mom said.