Friday, January 21

Christiane Benson for the Statesman

Christiane has Batten disease, a neurodegenerative disorder that leads to blindness, mental deterioration, a loss of motor skills and death, typically in the teens or early 20s. It's hard to tell that anything is wrong with this vivacious 8-year-old. Though legally blind, Christiane runs around the house playing hide and seek with her brother Garland, 6, and is learning how to tap dance.

Her parents helped develop a single test that will screen parents and children for 448 rare genetic disorders, like Batten, and will cost under $500, the current price for screening just one disorder. The test can't save their daughter, but they hope it can help other families and researchers looking for a cure.

Christiane, 8, peeks out from behind a chair while hiding from brother Garland, 6.

Christiane Benson, 8, plays with her mom, Charlotte, and brother Garland, 6, in their backyard in central Austin. Christiane has Batten disease, a neurodegenerative disorder.

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