CHARLOTTE — In most ways, Rhett Johnson is like any other first grader.
He loves soccer, hot wheels, and ninja turtles. His favorite part of school is recess.
“Rhett is just like any seven-year-old boy. He’s energetic and silly and he’s the sweetest man,” his mom, Dr. Megan Johnson, told Channel 9′s Elsa Gillis.
But unlike his classmates, he’s battling a rare genetic condition called Ataxia-Telangiectasia, which affects the nervous and immune systems. There’s currently no cure.
“So, Ataxia-Telangiectasia is similar in ways to muscular dystrophy, meaning it’s a neuromuscular progressive disorder. So over time, around the age of seven, which is what Rhett is, they start to progressively decline. Most of them end up in a wheelchair by the age of nine,” Dr. Johnson said.
Rhett’s parents said it was a long, winding road of testing that led to his diagnosis at age three.
“I think it’s easy to ask why and for me, the why usually ends up in grief. So instead of asking why, I started to ask who and what and how,” Dr. Johnson said.
The family launched into action, organizing fundraisers for research and spreading awareness.
“It needs a lot of attention, because there isn’t a treatment or a cure,” Dr. Johnson said.
Feb. 28 is Rare Disease Day. Rhett’s family encourage others who may be in their shoes to hold onto hope and find a community.
“Rare disease can be very isolating at times. So, I think if you have good support around you, it makes all the difference in the world,” Dr. Johnson told Channel 9.
“We love him so much, and we just want to do everything we can to lower his burden as he battles this through his life,” Dr. Johnson added. “And I think that for any parent that has a child with rare disease, they just want them to live the best life they can.”
Rhett is currently participating in a clinical trial that aims to slow the progression of the disease and his parents say he’s handled it well so far.
Click here to learn more about the family’s fundraising efforts.
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