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PITTSBURGH — Katelyn Pownall wasn’t sure her 3-year-old son would ever meet Santa Claus.
Nash was born with Menkes disease, a rare genetic disorder that disrupts the body’s ability to absorb and distribute copper. This causes severe damage to the nervous system, as well as connective tissue abnormalities in the skin, joints, and bones.
Menkes is terminal, and since May, Nash has lived at the Children’s Home of Pittsburgh, Pownall told Spotlight PA. The hospital provides specialized pediatric care to medically fragile children.
“We just count our moments, not our days,” Pownall said.
Earlier this month, Pownall and Nash relished a magical moment: They met both Santa and Mrs. Claus at the hospital.
Against a paper recreation of a brick fireplace, the Yuletide couple cuddled patients, gave high fives, and handed out gifts. For Nash, the Clauses sang a short rendition of “Jingle Bells.” And he got a stuffed cat and a copy of Where the Wild Things Are that were donated by a church.