Jamie, Stephen, and Ben are the Heywood brothers, adoring daredevil sons of a retired therapist and MIT professor. At 29, Stephen, a carpenter, is diagnosed with Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s Disease, a progressive fatal condition that bombs nerve cells in the brain and spinal cord, collapsing voluntary muscle control, and making it hard to chew, swallow, speak, even breathe. Paralysis is nearly certain. His Brother’s Keeper: A Story From the Edge of Medicine, by Pulitzer Prize-winner Jonathan Weiner chronicles the Heywood family’s deeply human, defiant response to Stephen’s grim prognosis. Victor Bevine narrates with perceptive, poignant stillness. His meditative pacing steadies the frantic deadline of the premise: find a solution or lose Stephen. Bevine applies the same pebble-smooth reverence to Weiner’s own sorrow when he learns his mother, Ponnie, is dying from a similar, rare neurogenerative disease.
As brother-built dynasties go, the Heywoods are enthralling. Jamie, the eldest, is a charismatic compulsive talker who quits his job to cure ALS. A trained mechanical engineer, Jamie studies gene therapies and hires “guerilla scientists” to develop experimental treatments and pioneer stem-cell research. In the process, he ruins his marriage to Melinda an exuberant belly dancer with a PhD in medieval French literature.
Stephen is six-foot-three and blindingly handsome. He’s wry and observant, a self-taught architect who finds his calling rebuilding old, rotting historical homes. The worthy anchor of His Brother’s Keeper, Stephen despises pity and fuss. He marries, fathers a son, and works with his hands as long as he can. “The more he lost, the stronger he seemed,” Weiner notes of Stephen, by then, skeletal and wheelchair-bound, nourished by liquid Ensure his mother, Peggy, pours into his stomach tube. Ben is the youngest Heywood, an engineer like Jamie and their father. He’s creative and logical, a practical risk-taker as droll and dynamic as the rest of his tribe. Still, and always, though, the love story belongs to Jamie and Stephen. Nita Rao
Stephen Heywood was 29 years old when he learned that he was dying of ALS - Lou Gehrig's disease. Almost overnight, his older brother, Jamie, turned himself into a genetic engineer in a quixotic race to cure the incurable. His Brother's Keeper is a powerful account of their story, as they travel together to the edge of medicine. The book brings home for all of us the hopes and fears of the new biology.
In this dramatic and suspenseful narrative, Jonathan Weiner gives us a remarkable portrait of science and medicine today. We learn about gene therapy, stem cells, brain vaccines, and other novel treatments for such nerve-death diseases as ALS, Alzheimer's, and Parkinson's - diseases that afflict millions, and touch the lives of many more. "The Heywoods' story taught me many things about the nature of healing in the new millennium," Weiner writes. "They also taught me about what has not changed since the time of the ancients and may never change as long as there are human beings - about what Lucretius calls 'the ever-living wound of love".
A well written book about a family racing for a treatment for a family member diagnosed with ALS.
It is a sad and at time disturbing portrayal of a brother trying to find a way to use "gene" therapy and/or stem cell therapy to cure his dying brother, while struggling with the temptation to develope a business with these therapies. The book examines the patient,family, friends; their interactions, support and always,their hope. Mr. Bevine is an excellent narrator making the book all the better.
6 of 6 people found this review helpful
I so much enjoyed THE BEAK OF THE FINCH, Jonathan Weiner's book on the studies done on the Galapagos Islands of Darwin's finches that I did not hesitate to try this examination of a brother's struggle to find a cure for Amytrophic Lateral Sclerosis, or ALS also commonly known as Lou Gehrig's disease. It is a subject of particular interest to me as my own mother died of ALS when she was only 52. The story examines not only the tragedy of neuro degenerative diseases, but the ethical struggles that accompany this brother's search for funding and a cure for his sibling's illness. There is also running through the book Weiner's own mother's discovery of and death from a neuro-degenerative disease.
The book was well narrated and held my interest, but didn't have the same impact of Weiner's first book, perhaps because the work in the book is not as successful or heroic as the Beak of the Finch. That said I did find the story worthwhile. particularly from the perspective of the ethical dilemmas presented and I do think it would be of interest even to those without a personal connection to these diseases. I would recommend the book to non-fiction readers who find the progress (and sometimes the setbacks) of medical science of interest as it is very well written and the reader does an excellent job.
2 of 2 people found this review helpful
Having a close friend with ALS and having had 3 other friends die from it in the past, I enjoyed the medical explanations and factual content of this book along with the story. It was very believable and well written. I hope some day a cure is found
2 of 2 people found this review helpful