Raccosta’s remarkable family memoir recounts and reflects on caring for two sons battling a rare, life-threatening illness.
In 1999 and 2000, doctors told the author that her infant sons, James and Sam, had inherited a rare genetic disorder, tri-functional protein deficiency. James, meanwhile, was also suffering from an unrelated rare liver disorder. As Raccosta struggled to understand the complex diagnoses, Dr. Elizabeth Rand of the Children’s Hospital of Philadelphia (CHOP), a pediatric liver disease specialist, told her that James might have been the sixth diagnosed case in the world to suffer from both diseases. James endured two liver transplants and countless other hospitalizations and surgeries, and he suffered a cardiac arrest that left him brain-damaged. His spitfire younger brother, Sam, endured his own round of life-threatening incidents. Both children required continuous intestinal feeding pumps and regular blood sugar checks, as well as the usual infant care. The entire family spent more time at CHOP than at home, and the author’s healthy daughter Gabrielle grew accustomed to her mother’s absence; for Raccosta, the situation became a major source of anxiety as she missed family holidays and many of her daughter’s milestones. The author’s riveting storytelling, original poems and light humor set her story apart from many other parenting memoirs. The author expresses her anger and frustration and questions God about her family’s situation, but she also maintains a healthy, empathetic perspective, and her recognition of her blessings keeps her, and her story, from plummeting into despair. Much of the memoir centers on hospital visits and caregiving, but Raccosta also shares how she and her husband sustained one another and learned to lean on friends and family to get through an unimaginable decade. The Raccostas not only survive, but thrive, in this eloquent family love story.
A notable, inspirational story of hardship and survival.