Her first thought after she heard the news, after she screamed and made her mother and boyfriend leave the room, was that she would never have children. Amanda Baxley’s doctor had just told her, over a speakerphone in her psychiatrist’s office, that she had the gene for Gerstmann-Straussler-Scheinker disease, or GSS, which would inevitably lead to her slow and terrible death. This rare neurological disease had stalked her family for generations. Her father, 56, was even then in its final throes.
On the spot, Ms. Baxley, 26, declared she would not let the disease take another life in her family line, even if that meant forgoing childbirth. “I want it stopped,” she said. The next day, her boyfriend, Bradley Kalinsky, asked her to marry him.