Owensboro child diagnosed with rare, untreatable genetic disorder
OWENSBORO, Ky. (WFIE) - King’nazir Gates is a five-year-old boy who lives in Owensboro.
His name means “one who overcomes in victory.” Perhaps no one lives up to their name more than King’nazir.
Over a year ago, King’nazir began losing his ability to walk. His parents later found out that he has a rare, and untreatable, genetic disorder.
King’nazir’s parents Carl Gates and Lakeia Nard say they’ve taken him to 27 doctors in the last year, trying to find out what was wrong with their son.
“We went through all of those doctors and there was nothing they could say,” Nard said. “Even when we went and flew out to the National Institute of Health, they said this is the gene mutation, but your child is one of the only kids in the world with this disease so there’s nothing we can do.”
After being misdiagnosed three times, King’nazir was diagnosed with SPTLC 2, a genetic mutation so rare, it doesn’t even have an official name.
Similar to Lou Gehrig’s disease, his muscles are slowly deteriorating.
“By doctor’s terminology, his future is - he will deteriorate,” Nard said. “All of his muscles will deteriorate, his nerves too, until it gets to his lungs. He will no longer be able to swallow, then his lungs will no longer be able to function. Then he will pass away.”
Fighting an uphill battle is nothing new for King’nazir. He was diagnosed with autism at a younger age.
Despite this, his parents say he approaches each day with joy.
“He laughs. It’s like he understands what’s going on, but he laughs about it,” Carl Gates said. “For him to have so much going on with him, he accepts it and it’s like he uses that energy, and laughs about it, and shakes it off and keeps going.”
King’nazir undergoes several different treatments each day to help break up the mucus in his lungs, since his muscles are not strong enough for him to cough.
On Wednesday, he will have a feeding tube put in to help him get the nutrients he needs.
“From the perspective of a father, I wish I could take his place,” Gates said. “I wish I could rip every muscle and every cell out of my body that he needs and give it to him.”
“He might not make it,” Nard said. “We might not find nothing for him in time, but they might for someone else, and I want to make sure he doesn’t die in vein.”
Nard found that getting help for such a rare disease was nearly impossible, so she started her own non-profit for any child with a rare disease called Melanin Children Matter.
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