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The Boy in the Moon: A Father's Journey to Understand His… (2009)
by Ian Brown
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Amazon.com Product Description (ISBN 0312671830, Hardcover)
A New York Times Top 10 Book of 2011
“[A]n intimate glimpse into the life of a family that cares around the clock for a disabled child, that gets so close to the love and despair, and the complex questions the life of such a child raises...It is a beautiful book, heartfelt and profound, warm and wise.”
—Jane Bernstein, author of Loving Rachel and Rachel in the World
Ian Brown’s son Walker is one of only about 300 people worldwide diagnosed with cardiofaciocutaneous (CFC) syndrome—an extremely rare genetic mutation that results in unusual facial appearance, the inability to speak, and a compulsion to hit himself constantly. At age thirteen, he is mentally and developmentally between one and three years old and will need constant care for the rest of his life.Brown travels the globe, meeting with genetic scientists and neurologists as well as parents, to solve the questions Walker’s doctors can’t answer. In his journey, he offers an insightful critique of society’s assumptions about the disabled, and he discovers a connected community of families living with this illness. As Brown gradually lets go of his self-blame and hope for a cure, he learns to accept the Walker he loves, just as he is. Honest, intelligent, and deeply moving, The Boy in the Moon explores the value of a single human life.
(retrieved from Amazon Mon, 30 Sep 2013 13:44:16 -0400)
Ian Brown's son, Walker, was born with a genetic mutation so rare that doctors call it an orphan syndrome: at most, three hundred people around the world live with it. At thirteen, Walker is still in diapers: he is globally delayed, he can't speak, and he has to wear cuffs on both arms so he won't constantly hit himself. He will require constant care for the rest of his life. The boy in the moon tells the story of one frail boy and the tiny constellation of people who love and care for him. From this intimate perspective, Ian Brown opens out a profound meditation on what life is worth, and what it means for all of us.
An edition of this book was published by Penguin Australia.
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