Moonrise: One Family, Genetic Identity, and Muscular Dystrophy

by Penny Wolfson

Overview

Moonrise is Penny Wolfson's first-person account of her family, her son Ansel, and his progressive disability, caused by the genetic disease Duchenne muscular dystrophy. The journey begins when he is born and deemed a particularly beautiful and magical baby, continues with the alarming possibility, at the age of two, of "wrongness," takes us through the diagnosis of disease and prognosis of early death, and brings us to his adolescence, where his parents are never sure if the moon is rising or setting over his life.

As she traces her son's development and the impact of his disability on her worldview, she embarks on a quest to understand scientific advances and their implications. (The gene was isolated at approximately the time Ansel was diagnosed.) She also explores special education, giftedness, prenatal testing, and the genetic links she shares with her mother, sisters, and son. Questions about the disease-causing mutation persist: What does knowledge of the self on a molecular level mean? Is genetic self-knowledge our goal now, much as knowledge of the psyche was in the last century? Moonrise is an essential contribution to the dialogue about genetics, as well as a deeply human story about a remarkable child and his family.

Product Details

ISBN-13:	9781466868830
Publisher:	St. Martin's Press
Publication date:	04/22/2014
Sold by:	Macmillan
Format:	eBook
Pages:	256
Sales rank:	311,752
File size:	1 MB

About the Author

Penny Wolfson won a National Magazine Award for the essay on which Moonrise was based. Her work has appeared in The New York Times, The Atlantic Monthly, Exceptional Parent, and Good Housekeeping, and is included in The Best American Essays 2002. She teaches at Sarah Lawrence College and lives with her family in Dobbs Ferry, New York.

Penny Wolfson won a National Magazine Award for the essay on which her book Moonrise: One Family, Genetic Identity, and Muscular Dystrophy was based. Her work has appeared in The New York Times, The Atlantic Monthly, Exceptional Parent, and Good Housekeeping, and is included in The Best American Essays 2002. She teaches at Sarah Lawrence College and lives with her family in Dobbs Ferry, New York.

Editorial Reviews

In this heartfelt memoir, Wolfson employs expressive and skillful writing to convey how Ansel, her 17-year-old son, struggles to live with Duchenne muscular dystrophy (DMD). In spare, honest prose Wolfson describes how she and her husband, Joe, could not believe that there was anything wrong with their cheerful son, until it became clear that his motor abilities and language skills were far below those of the other children in his preschool. Interspersed with anecdotes about how family members, as well as Ansel, cope with his deteriorating condition is medical information about DMD, an inherited condition that is passed to males by female carriers. Although Wolfson, her husband and children have a warm family life, there is obvious tension among the three siblings, frequently sparked by Ansel's anger at his illness. He has also been isolated socially by his peers because of his disability and sometimes acts out in school, causing problems with teachers. Wolfson and her husband have been overwhelmed emotionally by all the physical adjustments that demand time and money. Despite DMD, Ansel emerges as a smart, brave teenager with a sense of humor; especially moving is Wolfson's description of his bar mitzvah. (Mar.) Forecast: A section of this memoir has already appeared in the Atlantic Monthly, and has won a National Magazine Award. Copyright 2003 Cahners Business Information.

Publishers Weekly

This is certainly not the first memoir written by the parent of a child with a serious illness or disability. However, Wolfson does a wonderful job of drawing the reader into her family's emotions when her son Ansel is diagnosed with Duchenne muscular dystrophy as well as the ethical dilemmas that reach far into the extended family after the gene that causes it is isolated and sequenced. Prenatal testing is available now, and against the scientific and historical background of Ansel's disease, Wolfson considers how parents and family members can respond, often quoting from her personal journal. Wolfson's many articles on muscular dystrophy have appeared in highly visible publications like the New York Times and Exceptional Parent. More important, a section of Moonrise that appeared in the Atlantic Monthly won a National Magazine Award. An excellent addition for most collections. [Mitchell Zuckoff's Choosing Naia: A Family's Journey explores similar ethical issues.-Ed.]-KellyJo Houtz Griffin, Eatonville, WA Copyright 2003 Reed Business Information.

Library Journal

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 AnselAdams’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) Agent: Ellen Levine/Ellen Levine Agency

Kirkus Reviews