Moonrise: One Family, Genetic Identity, and Muscular Dystrophy

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Macmillan, May 1, 2004 - Biography & Autobiography - 256 pages
3 Reviews
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.
 

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Moonrise: one family, genetic identity, and muscular dystrophy

User Review  - Not Available - Book Verdict

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 ... Read full review

Review: Moonrise: One Family, Genetic Identity, and Muscular Dystrophy

User Review  - Maria Vargason - Goodreads

This book was super hard to read! It wasn't that it was a "hard" book--it was the content. The subject matter is sooooo close to home that it was a little hard to bear. If you know anyone that has a child with muscular dystrophy this is the book for them to read. Read full review

Contents

Backdrop
1
Double Exposure
17
Family Album
43
Negative Capability
65
Moving Pictures
91
Camera Obscura
121
Photosynthesis
147
Depth of Field
175
Slide Show
191
Moonrise
207
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About the author (2004)

Penny Wolfson won a National Magazine Award for the essay on which Moonrise is based. Her work has been published in The New York Times, the Atlantic Monthly, and Good Housekeeping, and was included in Best American Essays 2002.

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