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Immortal Bird: A Family Memoir Hardcover – February 7, 2012
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More About the Author
IMMORTAL BIRD: A FAMILY MEMOIR, hailed as a "powerful and lyric" portrait of childhood and "an unforgettable evocation of the intense love between a father and a son," documents the family's navigation of the complex medical journey of Doron and Shealagh Weber's, first child. Damon was born in 1988 with a congenital heart defect (a single ventricle) that was successfully repaired, allowing him to lead a remarkably full life until he developed new complications as a teen.
At age 16-1/2, Damon received a successful heart transplant but then died of a post-transplant infection that was misdiagnosed as organ rejection and went untreated. The family brought suit in 2006 against New York Presbyterian/Columbia University Medical Center where their son was a patient but, as of 2013, the suit remains unresolved.
In addition to being named by The Washington Post as one of "50 Notable Works of Non-Fiction" for 2012, IMMORTAL BIRD was listed as Amazon's Best Book of the Month; on Indie Bookseller "Next" List; on Entertainment Weekly's "Must List;" and was one of nine official selections of the 2013 Chautauqua Literary and Scientific Circle, the oldest book club in America. The book has also had impact in the medical community where, for example, Congenital Cardiology Today published "A Cautionary Tale for Pediatric Cardiologists" in February, 2013, enumerating the many issues raised by Damon's case.
Since 1995, Weber has worked as a program director at the Alfred P. Sloan Foundation, a nonprofit philanthropy that supports research and education in science, technology, and economic performance. As Vice President, Programs, Weber runs the Public Understanding of Science and Technology Program where he pioneered the synergistic use of media and the arts to translate science for the public and launched national programs in theater, film and television that commission, develop, produce and distribute new work bridging the two cultures of science and the humanities. Grantees include Manhattan Theatre Club, Sundance Film Institute, Galatee Films, PBS, National Public Radio, BAM, World Science Festival. Weber also directs the Foundation's efforts to promote Universal Access to Knowledge by using emerging developments in digital information technology to make the benefits of human knowledge and human culture accessible to people everywhere. Grantees include Library of Congress, Internet Archive, Wikimedia Foundation, and Digital Public Library of America. In 2012, Weber made a grant for a pilot meeting on rice science at the Lee Kuan Yew School of Public Policy/National University of Singapore that brought together scientists from India, Pakistan, Bangladesh, Sri Lanka, Nepal, Bhutan and China in an exploratory effort at International Science Engagement.
In 2004, the Foundation received the National Science Board's Public Service Award, citing Weber's program "for its innovative use of traditional media--books, radio, public television--and its pioneering efforts in theater and commercial television and films to advance public understanding of science and technology." On behalf of the Foundation, he's also received the PBS Leadership Award for over a decade of support (2007); the Nielsen Impact Award for film from the Hollywood Reporter (2009); the Council of Foundations citation for "the visionary funding decisions of foundations in using media for their program goals" for a new web series, The Secret Lives of Scientists (2010); and, the Gold Communicator Award for a documentary about the Foundation's history, "Sloan at 75" (2011). His work at Sloan has been profiled in The New York Times, The Boston Globe, Fortune, Filmmaker Magazine and The American Way.
Weber serves as President of The Writers Room Board of Trustees, Vice Chair of the Digital Public Library of America Steering Committee, Advisory Board Member of the Science and Entertainment Exchange, and Board Visitor of the Wikimedia Foundation. From 1995-2005, he has served as secretary of the New York State Committee for the Rhodes Scholarships. He also is a member of the Council on Foreign Relations, the American Association for the Advancement of Science, U.S.A. Triathlon, and the Century Club.
In addition to Immortal Bird, he is author of Final Passages (with Judith C. Ahronheim); The Complete Guide to Living Wills (with Evan R. Collins, Jr.); Safe Blood (with Joseph Feldschuh); and op-eds in The New York Times ("The Best and the Guiltiest,"1993); LA Times ("Boomers Rewrite Candidate Profiles," 1996); Boston Review ("Sabbath's Theater," 1995); USA Today ("A Way Around Kevorkian," 1994); and Baltimore Sun ("BYOB,"1990).
Top Customer Reviews
The author is obviously intelligent well-educated, and well-connected by virtue of his work and background, but I certainly don't find that off-putting, as some readers reported. (Seriously, get over it, folks.) Certain people named in the book--scientists, film directors, actors--are part of Damon's story. To me, it seemed natural to include them. What comes across to me in this book is the depth of this man's love for his son, the unbearable agony of losing him, and an elemental desire to honor the memory of his wonderful child.
The shortcomings of the medical system in this case were frightening to read about. Though we necessarily hear only one viewpoint in a book such as this, that the parents felt so abandoned by the medical team at such a critical juncture was extremely disturbing. When the father of an ICU patient in a major medical center is reduced to racing down the hall trying to find someone to attend to signs of multi-system organ failure in his son, we ALL need to worry. I only hope that airing the systemic and individual failures recounted in this book will lead to some good.
Reading this book left me wishing I had known Damon Weber, and feeling a wee bit envious of those who did.
The author pays a wonderful tribute to his first born son in this haunting story of love and illness.
I could relate to this book so much, that at times, I wondered why I tortured myself by reading it. I also have a son with health issues. He had a kidney transplant at a year old. Now at 14 yrs. old, he will have a liver transplant in the near future. Terms like EBV, low platelet counts, anti-rejection drugs, etc are all too familiar to me.
When you have a child with a serious illness you learn early on to be an advocate for your child-politeness sometimes goes out the window. I understand Doron Weber's frustration level with medical professionals. Naturally you want to do everything in your power to make your child well. As in anything in life; there is good/bad. I'm sure the author would agree with me that there are many many medical professionals that are experts in their fields and give excellent patient care. (He mentions many of them in the book.) But there are also people, events, & circumstances that are out of our control. It's sad to think that events did happen that were out of Damon's parents control and contributed to his demise. (It brings to mind some scary stories of my own.)
Mostly this book is about a great spirit in Damon and the love of his family to make things as "normal" as possible. Thank you for sharing your story to help other families.
I can't even imagine the continued grief for the Weber family. Hopefully this book will bring them an added measure of peace. My heart goes out to them.
This book is a tribute to Damon Weber, a red-headed, artistic, fantastically intelligent boy, who was born with a major heart defect that was assumed to be have been corrected early on, but unfortunately led into another health issue known as PLE, a disease that doesn't allow the body to retain protein, and slowly but surely starves the person to death. The author and his wife thought PLE was a nightmare, until they began to fight it, and learned that dealing with the medical community, and the worlds best doctors and medical teams, was where the real horror lies.
As a nurse, I can attest to the fact that doctors do not return calls. And I have spent long, exhausting shifts keeping a patient comfortable and stable, only to be replaced by an eye-rolling lazy individual who barely listens to report, then goes for a smoke break, undoing all I've done on my shift in a few short minutes. Doctors, nurses, and almost everyone else you meet from the minute you step foot inside a hospital or medical institution, fail the patients who depend on them, by offering sub-standard care and attention.
The Webers had access to the best doctors money could buy, who turned out to be unreliable and uncaring, only showing up when things looked hopeful so they could receive the glory, then disappeared for days on end when Damon needed life-saving attention.Read more ›
Most Recent Customer Reviews
A sad father deals poorly with the loss of his son, and invokes GOD of all things. God is imaginary, and the sooner he realizes this the better.Published 1 month ago by Robert W. Finlay
I read this book straight through, long into the night. I was holding my breath, rooting for Damon. I feel I know your son after reading your
memoir. Read more
Immortal Bird was heartbreaking, but a beautiful story of the relationship between a father and son. It was hard to read but at the same time I couldn't put it down. Read morePublished 10 months ago by Jessica Corsetti
This book is well written and its subject (malpractice) is a very compelling one. However, I found it hard to relate to at times, due to the author's obvious wealth and access to... Read morePublished 16 months ago by Flamingo Girl
CLSC book - Great story...many lessons learned in its reading...writer is good story teller. Did the Immortal Bird die or not???? Book in good shapePublished on October 28, 2013 by Sallie Holder
I found Doron Weber's new book Immortal Bird a beautifully written memoir about his family and his son. Read morePublished on August 27, 2013 by Stanley Clark Lumb
Doron Weber has documented two fights here--one for his son's life and the other against the medical establishment. Read morePublished on August 24, 2013 by Book Shark
This book recounts an epic series of battles that were the last years of Damon Weber's life through the eyes of his father, Doron. Mr. Read morePublished on August 6, 2013 by S. Mikaila Wang