The Fight for Moira
A MONSTER snowstorm had just walloped North Carolina, and the city of Greensboro careened to a halt. Families were home building fires, sticking carrot noses in snowmen, sipping mugs of hot cocoa. Dan Smith, though, was worried. When he awoke that morning in January 2018 and saw his street hidden under a thick white blanket, he pondered how hard it would be to get to a hospital.
Two of his kids—Asher, eight, and Reese, four—ran in and out of the house in winter coats, cheeks pink, begging to go sledding. They weren’t the ones he was concerned about. Smith worried about his daughter Moira.
In some ways, Moira is like a lot of six-year-olds: She loves bubble baths, giggling with friends, and vanilla frosting. She has tremendous blue eyes, a toothy smile, and cascading blond hair. But in other ways—ones you notice as soon as you meet her—Moira is different. She can’t sit up and has only ever said a few words. When Dan’s wife, Dania Ermentrout, gave birth to her in 2012, Moira seemed healthy, but she struggled to nurse and soon began to twist and writhe. After many tests, Moira was diagnosed with pontocerebellar hypoplasia Type 2A, a rare disease caused by an inherited mutation that interferes with the growth of the cerebellum, the brain hub that coordinates muscle movements, and the pons, part of
