Dying Boy with Rare Genetic Disorder Gets One Last Adventure (video)


    King’Nazir Gates, a 6-year-old boy from Owensboro, was diagnosed with a rare and untreatable genetic disorder called SPTLC 2. He’s one of only a few kids known to have the disorder.

    King’Nazir caught rhinovirus last year and spent nearly three months at Norton Children’s Hospital in Louisville, where part of his disorder prevents him from coughing, which made it harder for him to overcome the virus.

    However, he was able to come home and was back to being his normal self. But things took a turn for the worse, and King’Nazir stopped breathing. By the time first responders arrived and revived King’Nazir, his brain was severely damaged.

    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.

    Through donations from people in the Owensboro community, King’Nazir’s parents were able to rent a horse and carriage and take him on one last trip to his favorite place, Smothers Park.

    King’Nazir’s mother started her nonprofit for any child with a rare disease called Melanin Children Matter. King’Nazir’s father also went back to school to start his own trucking business, which he plans to name after his son.

    Source: Cleveland 19


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