6-year-old with untreatable disorder takes one last ride

6-year-old boy with untreatable disorder takes one last ride
Published: Jan. 20, 2023 at 2:00 AM HST
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OWENSBORO, Ky. (WFIE/Gray News) - The streets of Owensboro came to a halt Thursday afternoon, as a police escort led a horse and carriage down Frederica Street.

Inside that carriage sat a 6-year-old boy, his mother and his nurse.

King’Nazir Gates was diagnosed with a rare and untreatable genetic disorder called SPTLC 2.

He’s one of only a few kids in the world known to have the disorder. It’s so rare doctors haven’t given it an official name.

King’Nazir’s parents, Carl Gates and Lakeia Nard, say late last year, King’Nazir caught rhinovirus. He spent nearly three months at Norton Children’s Hospital in Louisville.

Part of his disorder prevents him from coughing, which made it harder for King’Nazir to overcome the virus.

Nard said her son was able to come home and was back to being his smiling, laughing normal self.

“He was always in good spirits,” Nard said. “He stayed smiling and joking.”

Then, things took a turn for the worse.

“He went to go visit Daddy. He loved Daddy,” Nard said. “He stayed over there and played with him. Then I got the phone call that he was gone.”

Nard said her son stopped breathing. By the time first responders arrived and revived King’Nazir, his brain was severely damaged.

“They were telling us it’s time to let him go,” Nard said.

King’Nazir is now living off of machines. His heart rate is constantly monitored. He’s on a feeding tube and needs oxygen tanks to breathe.

“You can think you’re prepared, but you’ll never be prepared for something like this,” Nard said. “We thought we had another year at least, maybe two.”

Through donations from people in the Owensboro community, Gates and Nard were able to rent a horse and carriage. On Thursday afternoon, that carriage took King’Nazir on one last trip to his favorite place — Smothers Park.

“King’Nazir is an animal lover. He’s an outdoor lover. He’s a traveler,” Nard said. “He loves parks and he loves water. Because we were blessed to have this little extra time with him, I thought what better way to send him off than by doing everything he loves.”

Shortly after 2 p.m. Thursday, Gates carried his son from his bed and into the carriage. Police led the way as King’Nazir rode to the park in his mother’s arms. Family and friends followed behind in a procession.

Once they arrived at the park, dozens gathered to wave to King’Nazir, wiping away tears.

Family said this will be King’Nazir’s final trip to Smothers Park.

When he was first diagnosed, Nard found that getting help for such a rare disease was nearly impossible. She started her own nonprofit for any child with a rare disease called Melanin Children Matter.

Gates said he went back to school to start his own trucking business, which he says he plans to name after his son.