Savior Parents

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> The struggles of parents like Brad Margus and Leslie Gordon are less lonely than they were in the pre-Internet era. Numerous websites help such parents reach out and learn from one another; among them are sites created by the Genetic and Rare Diseases Information Center at the National Institutes of Health and the Genetic Alliance, an advocacy group. This June in San Antonio, Jannine Cody is convening the first World Congress on Chromosome Abnormalities. More than 1,000 parents, doctors and researchers are expected to attend. Sessions will range from "Neurological and Anatomical Imaging" to "Potty/Sleep Solutions." The event is the culmination of 15 years of work, with twin goals of building stronger advocacy groups for children with chromosomal abnormalities and establishing a nucleus of scientists dedicated to addressing their problems. "Somebody ought to give that lady a MacArthur," says Dr. Hale.

On a recent afternoon, Elizabeth Cody comes bounding down the stairs to greet her mother, who has just returned from work. There is nothing froglike or vegetative about the bright-eyed 19-year-old, who flops onto the sofa and expresses relief that her mother has remembered to bring home a chart showing exactly which part of her 18th chromosome is missing. "A boy at my school used to make fun of me, so I wanted to show him this," Elizabeth explains. After graduation in May, Elizabeth plans to attend a local community college, and then become a teacher's assistant in a hearing-impaired classroom and perhaps move out to California. One thing she can count on: her mother will be cheering all the way.