Moonrise
One Family, Genetic Identity, and Muscular Dystrophy
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5.0 • 1 Rating
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- $11.99
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- $11.99
Publisher Description
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.
PUBLISHERS WEEKLY
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.
Customer Reviews
Memories of my son.
As a mother of a son who lived and died with Duchenne Muscular Dystrophy, I found the memoir Moonrise to be both insightful, heartfelt and agonizingly relevant to me. My son died at the age of 26, eight years ago. Reading this memoir brought back many sad and agonizing memories. But it also brought back many memories that were beautiful, happy and funny. My son, Andrew was fortunate to have a few very loving and supportive friends. I would like to recommend the memoir Moonrise to anyone who is brave enough to want to know how a mother of a child with Duchenne lives, breathes, feels, grieves, copes and loves.