The Boy in the Moon
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A Canadian journalist traces his efforts to understand the extremely rare genetic mutation that causes his son to possess an unusual facial appearance, an inability to speak and a compulsion to hit himself, a disorder for which the author has traveled the world to speak with … More »
A Canadian journalist traces his efforts to understand the extremely rare genetic mutation that causes his son to possess an unusual facial appearance, an inability to speak and a compulsion to hit himself, a disorder for which the author has traveled the world to speak with medical specialists and connect with other affected families.
McMillan Palgrave
“[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.”
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.Baker
& Taylor
A U.S. release of an award-winning Canadian memoir traces the author's efforts to understand the extremely rare genetic mutation that causes his son to possess an unusual facial appearance, an inability to speak and a compulsion to hit himself, a disorder for which the author has traveled the world to speak with medical specialists and connect with other affected families. 35,000 first printing.
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Add a SummaryCanadian journalist Brown writes of his gnawing search to understand the ineffable, unknowable meaning of his genetically impaired young son’s life. More than a family memoir, more than the story of his son Walker’s enigmatic, wordless world, this is a cri de coeur that voices every parent’s grief at the inevitable thwarting of the dreams and expectations they hold for their children. Brown’s fearless, unsentimental prose exposes the myth of easy answers that genetic testing seems to promise, and demands scrutiny of commonly held definitions about what constitutes a life worth living.
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Add a CommentIan Brown shares an honest look at life with a profoundly disabled son, and in doing so addresses the question of what it means to live a meaningful life.
Well written description of the heartbreak of raising a profoundly disabled child. This particular family is Canadian; it would be interesting to have a comparison with the U.S. regarding availability of services for the child and the family. Worth reading.