This is a book written in simple, passionate language—a book that reads with ease and moves us deeply, without sacrificing the precision of scientific language. These are stories of children and young people fighting illness. Fourteen true stories of some of the patients admitted to one of New York's leading pediatric hospitals for rare congenital disorders.
The author is a pediatrician specializing in genetics, and through the accounts of these fourteen young patients, he traces the arc of his own life: from his days as a timid, uncertain student to his emergence as a diagnostician and healer of growing skill and responsibility. Today he directs the Center for Congenital Disorders at Montefiore Hospital in the Bronx and serves as associate professor at Albert Einstein College of Medicine.
A thread runs through these stories and through the chapters of Dr. Marion's life—constant from beginning to end. It is his attentive, affectionate regard not merely for the disease each small patient carries, but for the whole person living with it, in all their complexity and particularity. In this physician there is steady faith in the child's capacity to heal, concrete hope, purposeful action, and devotion. Reading his words, we feel profound gratitude for his approach—and our gratitude extends to all those doctors, regrettably too few, who do not stop at clinical curiosity, but transform every encounter with a child and family into a meeting between brothers and sisters, where the physician brings all his strength and skill to bring relief and, if possible, healing, and where patients and families entrust themselves with confidence and fight alongside him against all difficulties, armed with the courage and hope that only a true meeting can kindle.
These encounters often continue for years, through a child's growth and development. The relationship deepens; understanding becomes richer. Dr. Marion speaks of the respect and deep emotion each young patient inspires in him, and of the lessons in living they teach him along the way. These are stories about faith in life, about refusing to surrender, about solidarity, about courage.
Beyond any pessimism we might wrongly harbor, physicians like this one exist in large numbers in our own country, as do young people like these and families like these. To them goes our gratitude and our hope.
- Natalia Livi, 1993