![]() She is challenged with psychological and ethical issues involving marriage, children and her own death. Baxley granddaughter, Amanda, must decide whether to be tested for the gene. Eventually this process leads to a test that can identify the mutant gene. Scientists in different parts of the world are simultaneously studying the links between prion diseases, via the incredibly slow, laborious process and competitive nature of scientific research. Kolata describes the personal suffering endured by victims and families of victims forced to endure the slow, and devastating progression of GSS. It begins with a genetic family tree, “… to establish the transmit ion of disease through generations of Baxleys…” The struggle between denial and acceptance of their genetic inheritance is both tragic and admirable. A casual comment from an acquaintance during the funeral of the Baxley patriarch sparks son, Dr. Of the four Baxley sons, two of them are neurologists. The story of the Baxely family is told parallel to the science giving this read a very human perspective. New York Times science writer Gina Kolata traces the scientific discoveries and developments leading to the identification of the mysterious and baffling prion diseases. The disease usually hits between ages thirty to fifty. Symptoms are spasticity, loss of speech, cognitive dysfunction (similar to dementia) and general degeneration of mental and physical faculties. Gerstmann-Straussler-Scheinker (GSS) disease is a prion disease that causes rapid degeneration of the cerebellum. Prion diseases are neurological, rapidly progressive, and always fatal. ![]() The Baxely’s also carry a genetic mutant with devastating consequences for each generation. The Baxely family of South Carolina is a close-knit, religious, civic minded, physically active and well-respected clan with deep roots in Huxley, SC. Mercies in Disguise: A Story of Hope, a Family’s Genetic Destiny, and the Science that Rescued Them Rita Recommends (Reading Recommendations).Magazines, Newspapers, & Current Events.
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