October 24, 2011
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.