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Immortal Bird by Doron Weber


“A powerful and lyric portrait of a son and a vibrant family.” Toni Morrison, author of Beloved

“The story is Damon himself, his life, his loyalties, his courage, his eloquence (Damon’s blog excerpts alone make the book worth reading) and his family, all rendered with love, humor, pain and exquisite clarity. Beautifully told and skillfully paced, surprisingly joyful at times, this memoir above all presents an extraordinary young life. In the brightness of this life, the realities of illness, pain and medical imperfection are secondary for the reader, and ultimately disappear. The radiance remains.” Washington Post

 “Devastating.” Entertainment Weekly, A-

 “[A] ferociously tender memoir…lovely and heartbreaking.” —PEOPLE (3.5 out of 4 stars)

 “Beautifully written…[As] the end approaches, so does a sense of the miraculous: Like the brightest stars, Damon’s energy consumed him, even as it galvanized others. It’s that luminosity, carefully expressed by a devoted father, that makes this memoir so transporting.” —MORE magazine

Damon Weber is a brilliant kid – a top student, skilled actor and a natural leader at school. Born with a congenital heart defect corrected by surgery when he was an infant, Damon lives a big life with spirit and independence that have always been a source of pride to his parents, Doron and Shealagh. But even as teenaged Damon continues to thrive socially and academically, his ever-vigilant parents start to pick up on worrisome signs: Damon’s physical development has stagnated, his abdomen looks distended, and his energy flags.

In the unsettling weeks after 9/11, their worst fears are confirmed: Damon has developed a serious and poorly understood medical condition that may require a heart transplant for survival. His body is leaking protein, and drastic moves must be made—quickly. As Doron sets off on a race against time for a solution, poring over medical studies and consulting countless experts about every treatment available, Damon musters his strength and carries on with the life of a venturesome teenage boy. He learns to sail and ski, takes the unique opportunity to go horseback riding with a world-champion bull rider, maintains his studies, and hangs out with his siblings and friends whenever he has the energy. And he continues to prove his talent on stage, directing a 23-person play and even making his national television debut on the popular HBO series “Deadwood.”

Eventually it becomes clear, however, that Damon’s condition has deteriorated so much that a transplant is his only hope. Doron and Shealagh – after interviewing myriad doctors and hospitals – make the momentous decision to place him on the donor waiting list, and the lion-hearted Damon prepares for battle.

“Red Sox come back to win four consecutive games make world series and baseball history….Which goes to show you boys and girls: it ain’t over till it’s over,” Damon writes with trademark wit and verve on his blog in the months leading up to surgery.

Weaving Damon’s written thoughts with his own candid and beautifully rendered recollections, Weber gives readers an intimate glimpse of a vibrant and loving family as they embark on a dramatic journey to save their remarkable son—and a rare window into the mind of a teenage boy as he grapples with a grim diagnosis.

At once a triumphant coming-of-age tale, a moving portrait of a burgeoning friendship between father and son, and a searing story about the perils of modern medicine,
IMMORTAL BIRD stands as an unforgettable testament to a young boy’s passion for life and the redemptive power of art in the face of the unthinkable.