描述
This is a book about everyday heroes. Each moment of their lives, caregivers of children with rare disorders are waging a battle to give their children life, health and hope for the future. They're looking for answers, raising money for research, running interference with healthcare institutions, nurturing their children and hoping against hope for a cure. In this collection of inspiring and sometimes heartbreaking stories, you'll discover what it's like to take this journey. All profits from this book will be donated to the charities selected by each of its authors.