Waldo Man Living with Rare Genetic Disorder

Updated 1 year ago

When something’s going on with your child, you want to know what’s causing it and what it is. For a family in Waldo, they’ve been trying to get those answers for more than a decade. Every NASCAR fan has a favorite part of the sport. ” Wrecks,” said Michael Kelley. ” And the rumble?”, asked his mom, Carol. ” Yeah,” said Michael. Michael likes the action. He also likes the drivers. ” We took a trip this February to North Caroline, to see what? The NASCAR Hall of Fame of course,” explained Carol. Michael’s room is a Hall of Fame of its own. You’ll find the walls covered with NASCAR posters, and most of them, are signed by the biggest names in the sport. ” I mean, how many kids have met, let’s see, Richard Childress, and Kevin Harvick. I mean, I could list off… And he remembers them all,” said Carol with a smile. Michael was born a healthy kid, but then, things took a turn. ” Low muscle tone, his hips were constantly out of the socket of needing surgery,” explained Carol. ” For the first 6 years of his life, he spent 27 months in a body cast.” It’s been 22 years, and his pit crew of doctors still can’t figure out why his body is crashing. ” Does he have Cerebral Palsy? No. Does he have Spina Bifida? No. Does he have Muscular Dystrophy? No,” described Carol. One thing they have been able to determine, is a name. ” Rare genetic chromosomal disorder, so rare that it has never been identified yet in the human world. It’s been only in the plant world. It’s called Triplication of Chromosome17,” explained Carol. Michael is 22 and he’s never been able to walk. ” He has the titanium rod in his back, in addition to the plates and the screws in the hip. So he’s like a bionic man,” said Carol with a laugh. Physically, his life hasn’t been on the smoothest track. ” Some days are long, some days we don’t sleep,” said Carol. ” His mind is good, his body is not so good. He’s just a regular kid stuck in a body that doesn’t work so well.” While there are still a lot of questions left unanswered, there is one thing that’s clear: you should never count Michael out of the race. Doctors don’t know why Michael has this strange genetic disorder. His mom tells us she’s been told it’s likely that no one else will ever have exactly what Michael has. It’s been difficult to get any services for him because he doesn’t fit into any of the specific categories. The family does the best they can, a lot of times, just by winging it.


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