Now in paperback. The personally harrowing and medically enthralling story of a family''s struggle to save a child from a deadly immune deficiency.
A journey through the deepest valleys and highest peaks of parenting. When a two-month-old baby falls ill, his apparently ordinary symptoms turn out to signal a rare and lethal immune deficiency. For parents Miguel Sancho and Felicia Morton, the discovery that their son, Sebastian, has chronic granulomatous disease (CGD) upends their lives and leaves the family with few options, all of them terrifying. With Sebastian at constant risk of deadly infection, they spend the next six years in some degree of self-quarantine, with all its attendant anxieties and stressors, as they struggle to keep their son alive, their marriage intact, and themselves sane.
The quest for a cure leads them into the alternate universe of the rare-disease community, and to the cutting edge of modern medicine, as their personal crises send them fum
