His Brother's Keeper: One Family's Journey to the Edge of Medicine

A couple of years ago I had a cancer scare. There was a growth in my kidney that the doctors said was either a dense cyst or a tumor. So I had to have a CAT scan every six months for a year in order to monitor the growth. If it stayed the same, I was OK. But if it expanded, cancer was the most likely diagnosis. Fortunately, it turned out to be a cyst. But I came away from that experience with the knowledge that things can go terribly wrong in my body even if I do everything right. How do you deal with such a worst-case scenario, and how far do you go for a cure? So it was with Stephen, a healthy and active 29-year-old from a successful family of overachievers. One day, Stephen was unable to turn the key in the door of the house he had just finished remodeling. He dismissed it as fatigue, but his hand continued to weaken and other symptoms arose. Finally, he could no longer ignore signs that something was wrong. He was examined and given a terrible diagnosis: ALS (Lou Gehrig's Disease). His younger brother Jaime, an engineer with an entrepreneurial streak, immediately switched careers to genetic engineering and began a race against time to save Stephen. Jamie founded an ALS foundation and enlisted the aid of various medical and research experts to help him find a cure using gene therapy. As Stephen's health declined, the pressure to find a cure intensified, until the stress began to take its toll on everyone involved. I was afraid that "His Brother's Keeper" would be a turgid read, but I was mistaken. Jonathan Weiner writes in a clear fashion, and has the ability to make complex subjects easy to comprehend. The author uses Stephen's saga as a gateway to the world of cutting-edge medicine, including cloning, gene therapy, and the use of stem cells. He also reveals the arcane world of drug development and testing in the United States. Not surprisingly, medical ethics also come into play, such as the right and wrong of profiting via seeking cures, and experimental drug trials on dying humans who have no other options. But most compelling was the personal story of a family rallying to the side of a terminally ill member. Mr. Weiner was not exempt from tragedy either, for he parallels Stephen's fight with his mother's decline from a rare neurological disorder. His account of the moment when he discovered she was "not Ponnie and...not my mother (p 220)" is perhaps one of the most disturbing passages I've ever read in a non-fiction book. Despite its excellence, I would've liked two changes in "His Brother's Keeper." First, it seemed that Stephen was a cipher in his own story. He pops in and out of the proceedings at various stages of disability, and appears lost in the tornado of Jaime's quest, the author's personal struggles, and the medical discourses. Perhaps that was intentional, but knowing Stephen better would have made him a more compelling figure. Second, the book does not end with Stephen's inevitable death and i

I read a review of this book and instantly wanted to read it. It is a heartbreaking story of an amazing family and the sacrifices one brother makes for another. It is well researched and although science is one of the major stars here, the author makes it understandable to the lay person. It made me laugh and cry along with the family - the kind of book you save to read again. I will follow Steven's progress with care and keep this family in my heart for long after the book is finished.

I just finished "His Brother's Keeper" and will not forget this family for a long time. This book is incredibly sad but it also shows the hope of a family trying to reverse the course of a terrible illness. It is a story of the turn of a new century, when there was hope in gene therapy, in internet start ups, in Dolly the sheep. The characterization within this book was excellent. The people who stuck out for me were Jamie, his brother Stephen and Stephen's wife Wendy. Jamie is the epitome of the driven man. His energy pops off the pages. Stephen is the searcher, the world traveler and, as Weiner writes, the Gen-X "slacker." That is, until Stephen finds his calling in carpentry and is just as driven as his mechanical engineer/entrepreneur brother.Wendy is introduced later in the narrative. She is by her boyfriend's (eventually husband's) side as he goes through the progression of the disease. Whether arguing with a neighbor or keeping a visage of hope for her husband, she is a valuable presence in Stephen's life and in this book.The author Jonathan Weiner is part of the story as well. He is captivated by the Heywoods and readily acknowledges it. His own mother is ill, and, as a "science writer," he has both knowledge and hope for the promise of new therapies and cures. Weiner writes of medicine, of the Heywood brothers, wives and parents, of September eleventh (briefly), and primarily, of hope. Hope and family are at the heart of this sad story of the new millennium.

"His Brother's Keeper: A Story from the Edge of Medicine" is is a beautiful book. At age 29, just when he is finding himself, Stephen Heywood, a carpenter and house restorer, is diagnosed with ALS -- Lou Gehrig's disease. His brother Jamie, an MIT-trained engineer, turns his life upside, and adapts his engineering know-how as quickly as he can in a quixotic effort to save his brother. Corralling cowboy scientists and traditional experts along the way, he puts together a team to work on a few different ideas, including his, which is the most promising--a kind of gene therapy. This is one of the best books I have ever read.Weiner', who won the Pulitzer Prize for the equally wonderful but very different "The Beak of the Finch," interweaves analogies and information from classic texts, from his own mother's struggle with a different neurodegenerative disease, and from intimate exposure to the Heywood family, into his narrative of the brothers' lives to create a phenomenally rich mix of philosophy, medical ethics, and up-to the minute science-- and above all, love. Weiner brings all of his incrdible intelligence and talent--along with real emotion--to bear in this unforgettable book.

Stephen Heywood was a carpenter, and a good one. His father was a director of an engineering lab, his mother a retired psychotherapist, one brother an aspiring Hollywood producer, and another brother an MIT graduate mechanical engineer. Stephen, therefore, was sort of a black sheep in a family of achievers. He had as a suitable project the restoration of a cottage in Palo Alto, where he was working in 1997. It was there that he put the key into a door, and it was stuck. He could not turn it, even though the lock was new, top-of-the-line, and previously working well. This simple problem puts into motion the events described in _His Brother's Keeper: A Story from the Edge of Medicine_ (Ecco) by Jonathan Weiner. Weiner has previously given wonderful accounts of current evaluations of the evolution of Darwin's finches and of the genetics of fruit flies, but here he has given a deeply human portrait of the effect of illness on one family. The problem is not the lock; Stephen dismantled it and it was in full working order. Then he discovered that he could turn the key if he used his other hand. The problem was within his own body.It was Stephen's first signs of amyotrophic lateral sclerosis (ALS), often called Lou Gehrig's disease. ALS inactivates neurons which control the muscles. The muscles atrophy and eventually even those involved in breathing cannot function, so that the victim dies of suffocation. Death comes almost always within five years after the condition has been diagnosed, and most patients die within two years. Stephen's engineer brother, Jamie, had tackled many projects, many problems, and had overcome them all. Surely finding a cure for Stephen's condition was just one more problem, essentially an engineering problem. It didn't matter that he was a mechanical, not chemical or biochemical or genetic, engineer. Jamie immersed himself in ALS research, first on the Internet, of course, and then in the medical journals. He found that one factor getting the blame is the overproduction of the neurotransmitter glutamate, which kills off spinal nerves. He set up a foundation to power his efforts, and eventually a biotech company. He got contributions from his family, and his wife belly-danced to make money at benefit performances. The odds against success were overwhelming, while Stephen lost one function after another, providing the tension within the story.It all should have turned out differently. It would be unfair to give away the specific ending of the book, but suffice it to say that Stephen at the end is heroically, calmly beating the odds in his own way, helped by a wife who is devoted to him and a family that cares for its lovable black sheep. He refuses to see himself as victim or hero, just prey to a "normal accident." He also does not mythologize Jamie's race for a cure, seeing it as a hunt for a "normal miracle." Jamie remains enthusiastic; it is clear that his own hubris in his project is only his individ