A searing account of a father’s struggle to save his remarkable son from a rare heart condition that threatens his life—“a powerful and lyric portrait of a son and a vibrant family” (Toni Morrison).
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: his father Doron’s relentless search for answers in a race against time.
Immortal Bird is a stirring, gorgeously written memoir of a father’s fight to save his son’s life.
A father celebrates his son s life while trying desperately to save it in this luminous character study cum medical odyssey. Weber recounts his teenage son Damon s battle with enteropathy, a usually fatal disorder, linked to a congenital heart defect, that starves the body of protein. Weber threw himself into researching and managing his son s ailment, but nothing stopped the progressive debilitation and wasting; finally Damon received a heart transplant that brought new disasters in its wake. Weber s detailed, harrowing narrative of Damon s struggle is in part an indictment of modern medicine, which he depicts as a combination of miraculous technology with dangerously flawed basic caregiving; his furious accusations of substandard practice at New York s prestigious Columbia Presbyterian Hospital erroneous prescriptions, botched diagnoses, slipshod nursing, callous doctoring, drive-by exams will raise eyebrows. But Weber reserves most of his energy for a tender, clear-eyed profile of his son. Small, sickly, but charismatic and a natural actor, Damon cunningly conceals his physical weaknesses while extracting every ounce of happiness from his straitened circumstances; even as he fades, this kid seems to own every room he enters. Weber s heartbreaking story gives us both a tragic cautionary tale and a moving account.