Moonrise: One Family, Genetic Identity, and Muscular Dystrophy [Hardcover]

Penny Wolfson (Author)

Book Description

ISBN-10: 0312289081 | ISBN-13: 978-0312289089 | Publication Date: March 26, 2003 | Edition: 1st

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.

Editorial Reviews

From 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.
Copyright 2003 Reed Business Information, Inc.

From the Back Cover

"Ansel and his mother may be two of the bravest people I've ever heard of. And I would never have heard of him were it not for a writer who chose to turn the tragic and the personal into something of universal value."
- Sebastian Junger, author of The Perfect Storm

"Wolfson has written a kind of timeless tale---a mother's fierce determination, her struggle for her clearly gifted, special son. This is not a sad book, but a courageous one. And these are ancient themes crafted in a work of literature by a writer who has mastered her voice and given us not just a narrative, but a woven fabric of life."
- Mary Morris, author of Nothing to Declare and Acts of God

"Wolfson doesn't crown herself a hero in the face of Ansel's disease . . . she is truthful, courageous, tenacious, and whip-smart; she is her son's greatest advocate and a narrator to trust and admire."
- PW Daily, Book of the Day

"With this book Penny Wolfson shows herself to be deeply human in every conceivable sense, except one: she writes like an angel."
- Lawrence Weschler, author of Mr. Wilson's Cabinet of Wonder

--This text refers to an out of print or unavailable edition of this title.

See all Editorial Reviews

Product Details

• Hardcover: 256 pages
• Publisher: St. Martin's Press; 1st edition (March 26, 2003)
• Language: English
• ISBN-10: 0312289081
• ISBN-13: 978-0312289089
• Product Dimensions: 8.5 x 5.8 x 0.9 inches
• Shipping Weight: 14.4 ounces
• Average Customer Review: 4.5 out of 5 stars  See all reviews (6 customer reviews)
• Amazon Best Sellers Rank: #1,162,526 in Books (See Top 100 in Books)

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Customer Reviews

Most Helpful Customer Reviews

8 of 8 people found the following review helpful:

5.0 out of 5 stars Beautiful writing, March 6, 2003

By A Customer

This review is from: Moonrise: One Family, Genetic Identity, and Muscular Dystrophy (Hardcover)

This book starts out more like a mystery or spy novel than the memoir it is. We are first introduced to the author, her husband and baby in a poetic first chapter. Next we are introduced to the "villain" (which turns out to be the genetic disease muscular dystrophy) only later to find out that it is not only slowly killing her beautiful child Ansel, but is also hiding inside her newly pregnant sister! We are then led through various vignettes where she describes her son's diagnosis, various treatments, and his transformation from an unusually attractive baby into a disabled child. Wolfson also describes her quest to understand the genetics of this disease where she not only gains insight into its biochemistry but also into the complicated history and dynamics of her own family. As the book concludes we find yet another transformation of Ansel from a troublesome disabled child to a quirky, intellectually gifted teenager. When I got to the end of the book I wanted another chapter to tell me what happens next to this remarkable mother and son. I was left feeling very moved, not with pity but with admiration. Talk about turning a bunch of lemons into lemonade! Anyone with chronic disease lurking in their family (and who doesn't) has got to read this book.

4 of 4 people found the following review helpful:

5.0 out of 5 stars Inspiring, April 4, 2003

By A Customer

This review is from: Moonrise: One Family, Genetic Identity, and Muscular Dystrophy (Hardcover)

Moonrise is a powerful book, beautifully written, full of forceful oppositions-health and disability, despair and joy, science and poetry. Were it a writer's imagined construct, it might be considered too calculated, too balanced between the life forces we control and those that control us. However, Moonrise is not a novel, rather a book that recalls the truism that life can be stranger than fiction. Penny Wolfson has written from the depths of her own experience a perfect parable, an inspiring story of the life of her son Ansel, rich in humor, strikingly full of unnerving Dantean imagery, and imbued with tremendous pathos. Though ostensibly concerned with Duchenne's muscular dystrophy, Moonrise is actually a story about the condition of life and its inherent struggles, speaks to anyone who ponders the eternal mysteries of why we live and how we live. In addition to describing the sobering details of genetic determinism and the wrenching realities of watching a child's body degenerate, Wolfson analyses and celebrates family and all its myriad complexities.

4 of 5 people found the following review helpful:

5.0 out of 5 stars a good book for all ages (exept maybe little kids), March 13, 2003

A Kid's Review

This review is from: Moonrise: One Family, Genetic Identity, and Muscular Dystrophy (Hardcover)

let me let you know, take me seriously with the stars, I really love the book. Penny sounds like someone very kind to everyone and everything, she treats everyone the right way. I still think you won't take me seriously, but you're probably right ignoring me.