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“Do you want to see my flashlight?” Five-year-old Beatrice Rienhoff bounds into the foyer of her family’s home, sporting a blond Prince Valiant haircut and a bashful smile. She plops down on the floor and starts unscrewing the top of her toy flashlight, eager to show off its innards. Her hazel eyes brim with curiosity. Beatrice looks like any other healthy preschooler until she leaps into her father’s arms for a hug. As she does, her shorts push up a bit, exposing her legs. They are, as her dad calls them, “little bird legs,” entirely lacking in visible muscle. There is no curve of calf or quadricep, just twiggy bones pressed against flesh. It’s surprising that Beatrice can get around so fluidly on such gaunt limbs.
After climbing down from the embrace, Beatrice removes her sneakers, revealing soft orthopedic braces wrapped around slender, stretched-out feet. Her older brother MacCallum, perched on a nearby sofa, suggests it may be time for a new pair of braces. Hugh, whose neat gray hair and ruddy skin give him a J. Crew vibe, squats to conduct a close inspection. He quickly sees that MacCallum is right—the balls of Beatrice’s feet jut beyond the edges of the braces.
This is a minor issue compared to the serious health problems that have vexed Beatrice during her brief life. She was born with a rare genetic disorder, and at one point the Rienhoffs feared she might never walk, let alone run and skip. Physical therapy has helped tremendously, but even today Beatrice struggles to climb stairs, and her muscles remain alarmingly frail. Hugh also has good reason to worry about her heart—the disease could dilate the aorta, with fatal results. More
