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Immortal Bird: A Family Memoir by Doron…
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Immortal Bird: A Family Memoir

by Doron Weber

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One thing is certain: I won't forget this story and its lessons. This real life story of Damon, a boy with a heart condition, and his family is touching, compelling, and appalling. The big lesson for everyone is not to take medical pronouncements lightly and to do your research. Doctors are people, too, and there are all kinds of them just as there are all kinds of people in every profession. Don't stop asking questions and don't hesitate to speak up, question, and get other opinions.

Damon teaches us how to live fully. His family shows us devotion and so much more. I fell in love with Damon, his attitude, and his family. The book might change how you think about a number of things, and reading about Damon could change your own perspective on any number of things. Doron Weber, the author and a writer, honors his son on multiple levels with this book. ( )
  Rascalstar | Jan 21, 2017 |
Immortal Bird by Doron Weber is a father's tribute to his son, Damon, who died too early. Damon was born on August 8, 1988 with a congenital heart defect that required two open heart surgeries (the Fontan procedure) when he was a baby. Years later, a month after 9/11, it becomes clear to his vigilant and hyper-alert parents that Damon is not thriving and something else may be wrong. Damon has PLE, protein losing enteropathy.

After exhaustive medical checkups and intensive research by Weber, all signs seemingly point to the PLE being a result of the Fontan operation. Doron learns that if the medical community cannot find a way to stabilize Damon's PLE, he will eventually need a heart transplant. Finally it became clear that Damon needs the heart transplant, which brings in its wake a whole new set of concerns. One clearly evident failure was the medical community in charge of Damon's case - or rather their lack of taking charge and following through with the proper attentive need for care and concern - and even proper medication.

At the same time that his parents are seeking a way to help him, Damon is clearly maturing and showing himself to have the potential to become a great actor. Even while clearly not well, he still manages to thrive socially as much as he is able to and explore his talents and abilities.

Is this a memoir for everyone? No.

I just don't think this is a memoir I could recommend to some people because they couldn't emotionally handle reading it. For some people Immortal Bird would simple be too painful to read, especially if you have had a family member or close friends struggling to endure and maintain the attentiveness a long-term illness or condition requires. It is a tribute from a heart-broken father to his son that recounts the triumph and the pain. How fragile is our hold on life and yet even a life cut short has value and meaning.

Members of the medical community might want to read it as a cautionary tale on what not to do. There were some cringe-worthy medical moments that could have been avoided.

Highly Recommended - but this is not a book for everyone.

Disclosure: I received an advanced reading copy of this book from Simon & Schuster and TLC for review purposes.

( )
  SheTreadsSoftly | Mar 21, 2016 |
Damon Weber was born with only one ventricle in his heart requiring two open-heart surgeries before he was four. He's a gifted and charming child who leads a fairly active life including sports and play with his younger brother and sister until he reaches junior high when new problems develop. His father, a Brown University graduate, Rhodes Scholar and program director at the Alfred P. Sloan Foundation has written this memoir of the battle to understand the illness, identify treatment options, and manage Damon's health while maintaining as normal a family life as possible. As the fly leaf says "[Immortal Bird] is a searing account of a father's struggle to save his remarkable son, a story of a young boy's passion for life, and a tribute to his family's love." ( )
  RebaRelishesReading | Jul 17, 2013 |
Immortal Bird: A Family Memoir by Doron Weber is a passionate memoir of Doron Weber's son, Damon. Damon was born with a huge health challenge. His heart was missing one of its ventricles. This made him a “blue baby:” He did not get enough oxygen for his body. There are several different birth defects that can cause this syndrome. My brother only lived for six weeks and had a different heart defect. So this experience of losing my brother to this syndrome made reading this book very personal.

The author does a lot name dropping and his portrait of his son seems too perfect. His family is affluent and he has a lot of medical connections that he has cultivated. That is the irritating part of the book. Once I accepted that I was deeply engrossed in the story. I kept wondering if Damon would survive his many medical crises. I was hoping so much for him. The author used some of Damon’s blog in the book and it seemed like Damon was speaking to me.

Damon struggled with the PLE (protein loosing enteropathy) which is sometimes a result from the operation that helped him after he was born. It was his parent’s constant battle to keep him alive, Damon loved the theatre and anything connected with drama. He had a lifetime of frustration with LPE and but that did not daunt his spirit.

Doron Weber relates his frustration with the medical “system” and careless but tragic mistakes in Damon’s treatment. I can believe what happened and understand the author’s anger. I have had similar experiences.

I encourage everyone who is interested in medicine and the struggles that a family goes through with a serious disease to read this book.

I received this book as a win from First reads but that in no way determined my thoughts or feelings in this review. ( )
  Carolee888 | Jul 5, 2013 |
A haunting memoir of Damon, a boy full of promise written by his father who loves him fiercely and would do anything in his power to make him well. Damon was born with a heart defect and underwent surgery as a baby which allowed him to lead a relatively normal life until his teens when his body started losing protein, he stopped growing and struggled with life. His father seeks medical advice across the country in the hope of overcoming the problem but all attempted treatments fail and a heart transplant is the only hope left. The book is written as a tribute to Damon's courage and spirit by a father who clearly would have given anything to heal his beloved son. Damon's voice is somewhat overshadowed by his father's but shines through in the sections from his blog later in the book. Despite the author being a strident advocate for his son, and probably a nightmare for medics and nurses treating his son, even that wasn't enough to ensure that Damon received the best treatment from the health service. ( )
  cscott | Apr 20, 2013 |
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Epigraph
Thou wast not born for death, Immortal Bird!

No hungry generations tread thee down;

The voice I hear this passing night was heard

In ancient days by emperor and clown:

Perhaps the self-same song that found a path

Through the sad heart of Ruth, when, sick for home,

She stood in tears amid the alien corn;

The same that ofttimes hath

Charm'd magic casements, opening on the foam

Of perilous seas, in faery lands forlorn. - From "Ode to a Nightingale" by John Keats (1795-1821)
Dedication
For Sam and Miranda, two ineffably brave, beatiful beings whose appearance i these pages is perforce brief but blessed presence in my life - all days pasat, present, and future - is a source of perpetual joy, infinite pride, and the profoundest gratitude and love.

For Shealagh ALson Macleod De Beurges Rosenthal Weber, my co-creator and full partner in the miracle of Damon, Sam, and Miranda and for a quarter century the love of my life.

For Robert and Helga, beloved parents, dear friends and fellow travelers, and true keepers of the faith, who always have been, and always will be, with me.
First words
I am walking up Prospect Avenue with my twelve-year-old son, striding side by side along the mottled sidewalk, when it strikes me he has not grown for a while.
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The father of the young actor best known for his performances in "Deadwood" describes his son's congenital heart defect, the young man's theatrical achievements, and the family's effort to find life-saving medical answers.

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