A Husband and Wife’s Race to Cure Her Fatal Genetic Disease

A Husband and Wife's Race to Cure Her Fatal Genetic Disease

Sonia Vallabh and her husband, Eric Minikel, walked into an examining room at Brigham and Women’s Hospital on an unusually warm December morning in 2011, two months of waiting down to final minutes. She was about to learn if she carried a genetic mutation for a rare, fatal genetic disease that kills sufferers by stealing their sleep, their memory, and, eventually, their consciousness. The illness, fatal familial insomnia, or FFI, usually strikes at about age 50. Sonia was 27.

Sonia and Eric sat down. Two women, hospital employees, chatted and laughed as they moved around the room. Is this a sign? Sonia wondered. If we’re about to receive life-changingly bad news, surely no one would be laughing, right?

 

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