Moving account of raising a son with Duchenne muscular dystrophy, a progressive degenerative disease that first cripples and then kills its young victims.
Wolfson, whose articles about her son Ansel and issues related to raising a disabled child have appeared in the Atlantic Monthly, the New York Times, and other magazines, here combines a personal memoir about the impact of muscular dystrophy on a family with an informative portrait of the disease itself, including its history and the genetic research currently being done. As the author explains, the Duchenne gene is located on the X chromosome, meaning that women who are carriers have a 50-50 chance of passing it on to their children. Genetic analysis showed that Wolfson, one of her sisters, and their mother all had the defective gene, putting any daughters they might bear at risk of being carriers and any sons victims of the lethal disease. Perhaps the most poignant portion of the book deals with the mental anguish of the author’s third pregnancy (Ansel was the first, a daughter came second). Now knowing she is a carrier, she undergoes prenatal testing that reveals first that the fetus is male and only later that it does not have the defective gene. Wolfson can be intensely personal, quoting frequently from her dream journal and showing openly her pride, her anger, and her sadness. At other times, she is the diligent reporter, exploring the world of genetic research, interviewing scientists, trying to clarify for herself and for the reader the work of geneticists that may someday lead to a treatment for Duchenne muscular dystrophy. She opens her narrative months before Ansel’s birth, as she and her husband admire a print of Ansel Adams’s hauntingly beautiful photograph Moonrise, Hernandez, New Mexico, 1941; she closes with Ansel 15 years old and wheelchair-bound, herself gazing up at a three-quarters moon, uncertain whether it is rising or setting.
Highly recommended. (10 b&w photos)