![]() If a disease has no cure, their reasoning went, what’s the point in knowing? Isn’t ignorance bliss? But Sonia was adamant. Her doctors, genetic counselors, and even some of her family members recommended against it. Sign up for the Daily newsletter and never miss the best of WIRED.Īlmost immediately, Sonia decided that she wanted to be tested for her mother’s mutation. “She wasn’t scared so much as sad,” Sonia remembers. Sonia, who was 25 at the time and living in Boston, called her mother often and visited whenever she could. ![]() She had trouble sleeping and spent her rare moments of lucidity grieving for the burden she had placed on her family. By May, she couldn’t eat, stand, or bathe herself. She was distractible, easily confused when she misplaced the TV remote, she’d look for it in the pantry. Once a poet, Kamni could barely string a sentence together. But by her birthday, that March, it was clear that something was seriously wrong. ![]() She’d single-handedly organized her daughter Sonia’s wedding, 300 guests drinking and dancing in the family’s backyard in Hermitage, a tight-knit former steel town. The previous summer, Kamni had been in good health. Maybe the harsh western Pennsylvania winter-two record-breaking blizzards in as many weeks-was wearing her down. She was 51 maybe middle age was catching up with her. But in early 2010, when Kamni Vallabh first began to complain that her eyesight was failing, there didn’t seem to be much cause for concern. In retrospect, it might have been a clue.
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