Batten Disease

ROCHESTER, N.Y. (AP) -- All three of Darlene Royalty's daughters began to go blind at age eight, victims of a rare and brutal brain disorder with no cure.

But Amber, Sandy and Sarah have beaten the odds and survived into their 20s. They spend most of their days in bed at home in Ursa, Illinois. Batten disease has left them unable to speak or see, and they rely on feeding tubes.

Batten disease is caused by defective genes that can't make enzymes needed to get rid of waste made by brain cells. The waste piles up and kills healthy cells until the patient dies.

Families dealing with the inherited degenerative disorder are meeting in Rochester, New York, through tomorrow. The yearly convention coincides with a summit of doctors who are seeking a cure.

Royalty says she knows there's no hope right now for her daughters, but she hopes that somebody else may be spared of the suffering.


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