Prader-Willi Syndrome: How Parents and Professionals Struggled and Coped and Made Genetic History

On March 28, 1971, Fausta Deterling gave birth to a boy. Curtis was floppy and had little appetite. When he was five months old, a doctor told his parents that Curtis had Prader-Willi syndrome. He told them that when Curtis was a toddler he would develop a huge and life-long appetite. He told them Curtis would become quite obese, would not be 100 percent mentally, and would not live past his twenties. And there was no cure or treatment. Fausta and her husband, Gene, did not accept this. Neither did a small band of professionals. As they struggled with the syndrome, another group of researchers discovered clues that PWS had a genetic cause. Their search deepened into a worldwide genetic mystery, whose resolution would change the textbooks.