Muscular Dystrophy in Children: A Guide for Families by Irwin M. Siegel
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Editorial Reviews
From Publishers Weekly
"Don't you feel so guilty passing it on?" O'Hagan asks another mom who's also passed fatal Duchenne muscular dystrophy (DMD) to her son. It's "God's will," the woman answers, but in spite of O'Hagan's Catholic upbringing, she finds little comfort in the thought that God would want to afflict innocent boys. O'Hagan lays out the basics of DMD: one in 4,000 males are born with the hereditary disease, passed via a faulty X gene. Females can be asymptomatic carriers, but if they pass a faulty X to a male offspring, he'll end up with DMD. O'Hagan's brother, son and two nephews were all born with no apparent symptoms, but the DMD was undeniable when the boys had trouble walking and climbing stairs, and kept falling down. O'Hagan watched her parents care for and then bury her only brother; when she realized she'd passed DMD to her own son, her grief was almost unbearable. Still, she stayed with him continually until his death at 24. Though missing him tremendously, O'Hagan worked through her anguish and learned how to live like a "regular" person. O'Hagan's story is extremely depressing, her pain raw and messy. Though marketed as a memoir, this is really a disease/grief book. While the book may resonate with parents of children with other similar illnesses, memoir readers lured by the book's Irish-Catholic title should look elsewhere.
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.
From Booklist
Shortly after the Civil War, Bridget Moore left Ireland for New York, like many -immigrants, with very little extra in her trunk--a pair of rosary beads, a clay pipe. But a dangerous invisible passenger accompanied her. She carried the gene that causes Duchenne muscular dystrophy, a wasting disorder affecting the legs, arms, and hips in young males. This unexpected curse is the dominant motif of O'Hagan's poignant, luminous, devastatingly moving memoir of her family and its long, courageous fight with a deadly disease. O'Hagan's brother, Richie, succumbed to it, as, years earlier, had two of her mother's brothers. Her first son, Patrick Jr., was born healthy, but her second-born, Jamie, the focal character of much of the book, wasn't so fortunate. We watch Jamie grow healthily until, when he is six, the family realizes that its fate is overtaking it again. Still, this is also a story of survival, perseverance, and hope, lit by great humanity and even humor. June Sawyers
Copyright © American Library Association. All rights reserved
See all Editorial Reviews
"Don't you feel so guilty passing it on?" O'Hagan asks another mom who's also passed fatal Duchenne muscular dystrophy (DMD) to her son. It's "God's will," the woman answers, but in spite of O'Hagan's Catholic upbringing, she finds little comfort in the thought that God would want to afflict innocent boys. O'Hagan lays out the basics of DMD: one in 4,000 males are born with the hereditary disease, passed via a faulty X gene. Females can be asymptomatic carriers, but if they pass a faulty X to a male offspring, he'll end up with DMD. O'Hagan's brother, son and two nephews were all born with no apparent symptoms, but the DMD was undeniable when the boys had trouble walking and climbing stairs, and kept falling down. O'Hagan watched her parents care for and then bury her only brother; when she realized she'd passed DMD to her own son, her grief was almost unbearable. Still, she stayed with him continually until his death at 24. Though missing him tremendously, O'Hagan worked through her anguish and learned how to live like a "regular" person. O'Hagan's story is extremely depressing, her pain raw and messy. Though marketed as a memoir, this is really a disease/grief book. While the book may resonate with parents of children with other similar illnesses, memoir readers lured by the book's Irish-Catholic title should look elsewhere.
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.
From Booklist
Shortly after the Civil War, Bridget Moore left Ireland for New York, like many -immigrants, with very little extra in her trunk--a pair of rosary beads, a clay pipe. But a dangerous invisible passenger accompanied her. She carried the gene that causes Duchenne muscular dystrophy, a wasting disorder affecting the legs, arms, and hips in young males. This unexpected curse is the dominant motif of O'Hagan's poignant, luminous, devastatingly moving memoir of her family and its long, courageous fight with a deadly disease. O'Hagan's brother, Richie, succumbed to it, as, years earlier, had two of her mother's brothers. Her first son, Patrick Jr., was born healthy, but her second-born, Jamie, the focal character of much of the book, wasn't so fortunate. We watch Jamie grow healthily until, when he is six, the family realizes that its fate is overtaking it again. Still, this is also a story of survival, perseverance, and hope, lit by great humanity and even humor. June Sawyers
Copyright © American Library Association. All rights reserved
See all Editorial Reviews
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