Cathy and Steve (not their real names) dream the same dreams other young couples do. They talk about marrying someday, having a home, and raising a family.
“Right, Steve?” she bellows.
Again Cathy stands straight, pulls her sweater back down over her stomach, and echoes his question. “Yeah. Why us?”
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A number of leading medical magazines, including Science News, have reported over the past few years that the syndrome, which has no cure, is believed to be caused by an abnormality in chromosome 15. This is the chromosome that is thought to affect the hypothalamus, the area of the brain that controls the appetite-regulating center. Researchers have discovered that a small portion of chromosome 15 is missing in more than half of all known individuals with Prader-Willi. Yet it is difficult for doctors to test whether a baby will be born with the syndrome, since about half of those who have it show no prenatal abnormality.
Dr. Andree Walczak, a specialist in children’s dysfunctional syndromes at Michael Reese Hospital, was the first to diagnose Steve and Cathy as having Prader-Willi syndrome. She is largely responsible for bringing the syndrome to light in Illinois. “I had studied Prader-Willi in Switzerland, where it was fairly well-known,” she says. In fact, she attended a number of Prader’s guest lectures during her medical training at the University of Geneva. “When I came to Michael Reese Hospital in the 60s, I was shocked at the lack of medical attention the syndrome received–only two or three pages in the best medical journals.
Walczak states that older people with Prader-Willi are most often characterized by their extreme obesity, short stature, and slumped shoulders. They also have abnormally tiny hands and feet, the result of a disorder in growth-hormone production. Typical facial features include almond eyes and a small mouth.
Indeed, the refrigerators at Glenkirk are always locked, and the workers’ sack lunches are kept stored in cabinets with combination locks.
