New York Times science reporter Gina Kolata’s new book, “Mercies in Disguise: A Story of Hope, a Family’s Genetic Destiny, and the Science that Rescued Them,” is a remarkable story about a family afflicted with a lethal neurological disease. And Kolata’s own story about how and why the family came to entrust their story to Kolata’s reporting is in its own way another compelling story.
Kolata, a longtime Princeton resident, will discuss her book on Wednesday, April 19, at 6 p.m. at Labyrinth Books.
“Mercies in Disguise” is Kolata’s narrative nonfiction account of the Baxley family, which is struck generation after generation by a genetic illness. The South Carolina family, many of them doctors, discover the cause of the disease and then work with fertility specialists who created a way to spare the children through an expensive process that would not cure the disease but at least keep it from spreading.
Through Kolata’s reporting the family relived the most painful moments, shared videos and photos, and revealed the family tensions that inevitably arose.
The process by which the family invited the public into their challenging lives is another story, which Kolata shared in a March 20 article in the Times. As Kolata reports she thought the reason was pragmatic: “I thought they hoped that if more attention could be given to GSS, the rare disease that plagued them, more researchers might take an interest and more money might flow to the research.”
But Kolata has been a reporter long enough to know that assumptions are always dangerous, especially about people’s motives. “I learned that again when I asked several members of the Baxley family why they spoke to me. I was correct that they hoped for more research — but that was only part of their reasoning.”
Some in the family saw the process as cathartic or as a means to memorialize their lost relatives and to give hope to others facing similar circumstances. Kolata quotes Tim Baxley, whose father, two older brothers, aunt, and cousin all died of the disease:
“For me, talking about the family experiences was therapeutic and more of a catharsis than anything else.” Sharing his story was a chance to tell people about his brothers and their “wit, wisdom, and their unique outlook on life.”