A Family Memoir
Damon Weber is a brilliant kid—a skilled actor and a natural leader at school. Born with a congenital heart defect that required surgery when he was a baby, Damon’s spirit and independence have always been a source of pride to his parents, who vigilantly look for any signs of danger.
Unbowed by frequent medical checkups, Damon proves to be a talent on stage, appears in David Milch’s HBO series Deadwood, and maintains an active social life, whenever he has the energy. But running through Damon’s coming-of-age in the shadow of affliction is another story: Doron’s relentless search for answers about his son’s condition in a race against time.
Immortal Bird is a stirring, gorgeously written memoir of a father's fight to save his son's life.
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Read an Excerpt
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. I look across at him. Damon’s head—that flame-red, leonine head—still falls below my shoulders, roughly where it had reached the previous year. He is so vital and engaging one easily forgets his size. But now his clipped stature feels like a withholding of fruition, as if his legs were young shoots held back by a clinging, invisible vine. I want to reach down and cut him loose so he can sprout. I don’t want a big change...see more
A perfect spring evening at Yankee Stadium. The air is warm, with the slightest breeze ruffling the flag. The baselines and foul lines are stamped in fresh white chalk.
I have taken Damon and two of his closest friends, Kyle and Keith, to a night game against the Boston Red Sox. The stadium is packed, the fight songs blaring and the beer flowing, as befits these longtime archrivals. But the three teens don’t really care. They enjoy the aesthetics and ambience of the game as much as the competition.
“Check out the body-paint dudes!” Keith points at the bleachers, where...see more
When the morning of his hernia operation dawns, we tell ourselves it is a routine procedure, but with Damon’s medical history, nothing is routine. We envy all our friends who freak out over their kids’ colds.
On the ride in, Damon and I discuss a new play I’m supporting with Alan Alda playing the Nobel Prize–winning physicist Richard Feynman. I work for a well-established philanthropic foundation and one of my roles is to help develop plays, films, and television shows with science and technology themes.
We arrive at the hospital, sign in, and go to the...see more
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Reading Group Guide
Damon Weber was born with a malformed heart. By the time he was four years old, he’d had two open heart surgeries. The second, an operation known as the Fontan procedure, seemed to solve his circulatory problems. But eight years later, teenaged Damon begins to experience new and puzzling issues. He’s diagnosed with a protein imbalance called PLE, a condition that occurs in approximately 10 percent of children who have had the Fontan operation. All of the Webers’ attempts to manage the condition come to nothing, and they make the weighty decision to put Damon up for a heart transplant—an operation that should both cure his protein imbalance, and eliminate all of his cardiovascular health problems. But in a wrenching reversal of expectations, an infection caused by the transplant costs Damon his life and the Webers their son.
Immortal Bird, written by Damon’s father Doron, takes the reader through Damon’s life, revealing a strong and talented boy who, despite enormous odds, lived a lif see more