Rare condition leaves woman slowly going blind and deaf

From the time she was a little girl, Rebecca Alexander had trouble seeing, but no one in her life — not her parents, her siblings, her teachers, her friends — thought it was a big deal. When Alexander turned 13, she would no longer respond when someone called her name from another room, and her mother, alarmed, took her to a specialist.

Her mother wanted to tell her what they suspected was happening. Her father believed it was better to do it later — let her enjoy her childhood.

“Very early on,” Alexander says, “my parents had very different ideas of what I should be told.”

She didn’t know then that she was going blind and deaf, that she suffered from an extremely rare disease called Usher syndrome, for which there is little research and no cure.

Alexander opens her new memoir, “Not Fade Away,” with an epigraph by Helen Keller: “Although the world is full of suffering, it is full also of the overcoming of it.”

Keller, too, was born with hearing and sight; in 1882, at 19 months old, she was ravaged by an unknown illness that robbed her of both senses. More than 130 years later, Alexander herself is a modern-day Helen Keller, a woman of fierce independence and great accomplishment who cannot understand how this could be happening to her.

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