His Brother's Keeper: A Story from the Edge of Medicine
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From Jonathan Weiner, Pulitzer Prize-winning author of The Beak of the Finch, comes His Brother's Keeper -- the story of a young entrepreneur who gambles on the risky science of gene therapy to try to save his brother's life.
Stephen Heywood was twenty-nine 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.
It turns out that the author has a personal stake in the story as well. When he met the Heywood brothers, his own mother was dying of a rare nerve-death disease. The Heywoods' gene therapist offered to try to save her, too.
"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.'
"The Heywoods mean the whole story to me now: an allegory from the edge of medicine. A story to make us ask ourselves questions that we have to ask but do not want to ask. How much of life can we engineer? How much is permitted us?
"What would you do to save your brother's life?"
was almost six months pregnant. On Tuesday, she and Peggy took Stephen back to the medical center, where doctors drained blood from the catheter they had implanted in his jugular. Stephen watched movies on a VCR while his blood drained, Peggy wrote thank-you notes for the foundation, and Wendy read, read, read—she was trying to read as many books as possible before the baby arrived. In a separate laboratory the doctors extracted what they needed from Stephen’s blood and then returned the rest
neurons that reside in the spinal cord, also may not be functioning quite normally. And so—” Just as Doctor Brown steeled himself to deliver the death sentence, Jamie interrupted from the doorway. “In the cortex?” he asked. “Yeah,” said Doctor Brown. “I’ll draw you a picture of that.” He got out a pen and a legal pad and they all gathered to look. “So there’s a suggestion then that you have involvement of both upper and lower motor neurons,” Doctor Brown said. “So, for example, if this is,
of me on a big television screen. In the screen’s lower right-hand corner I could see the tip of a very fine glass hypodermic needle. I had a joystick in my right hand, and when I jiggled the joystick, the needle moved around on the screen. Slowly, I maneuvered the needle until it touched the embryo’s rear end. Then I pressed a foot pedal. On the screen, I saw a shimmer above the needle tip, like hot air above a candle. And that was it. If any of that syringe-load of DNA found its way inside the
basic science.” The Christopher Reeve Paralysis Foundation no longer supports that biologist. “I’m just saying all these things for the first time out loud,” Jamie would say, for the tenth time, pacing up and down in the basement, and building castles in the air with the money they hoped they were about to raise. He foresaw a staff of roving scientists who would read everything new in the literature, like Joe Gally, and go out to talk to people in every field on the borders of ALS, hunting for
ammonia builds up, the baby goes into a coma and dies. Volunteers in most gene therapy trials are, like the parents of Canavan babies or like the family of Stephen Heywood, looking at a situation so desperate that they are willing to take almost any risks. But Wilson’s OTC trial was unusual for the field because he and his team included people who had milder forms of the disease. All volunteers, healthy or dying, know that they may lose their lives, and that the benefit may only be for people