The outlook for children with hemophilia keeps getting better. Treatments are safer, easier to administer and new, longer-acting products are becoming readily available. Specialists at comprehensive hemophilia centers all around the country offer innovative treatments while advancing national standards of care. Experts at these centers give patients and their families access to the latest clinical and research developments. By emphasizing the importance of early diagnosis and intervention to prevent complications, these specialists create an enormous impact on patients' health and long-term well-being. So it's safe to say that there is every reason in the world for parents of children who have been diagnosed with hemophilia to be hopeful about their child's future. Nevertheless, having a child with a chronic illness presents many challenges. There is much to learn, much to understand, a lot to teach and a new reality to adjust to. Concerns about bleeds, joint damage, inhibitors and pain are very real. We interviewed parents whose children are treated at the Boston Hemophilia Center about their experiences. In this book they share what it's been like to raise a child with hemophilia from birth to age 6. Through their stories, we appreciate that the journey from receiving an initial diagnosis to feeling capable and in control of the situation can take more than connecting with a team at a treatment center. Home care nurses, other families who have children with hemophilia and myriad of other resources all play important roles in a newly diagnosed family's capacity to cope. These families understand what it's like to have a child with hemophilia like no one else can. The guidance, understanding and practical tips they offer from their own experience are gifts to others who are embarking on this journey. In this book, you'll find excerpts of conversations with 19 parents (15 mothers and four fathers) of children with hemophilia A or B. The children have mild, moderate or severe hemophilia and come from a variety of backgrounds. Some parents knew that they might have an affected child, while it came as a complete surprise to others. Despite each family's particular challenges, they have all faced similar heartaches and struggles, made huge achievements and seen unanticipated rewards. This book is their gift to you.
About the Author: Laura Gray grew up in Newton, Massachusetts. She graduated from Boston University and got her Masters of Social Work at Smith College. She has worked at Boston Children's Hospital for the past 21 years and is currently the Projects Director at the Boston Hemophilia Center. Before that, she was a social worker for the adult and pediatric patients for 10 years. This her second "Gift of Experience" book. Allie Boutin was born in Mexico and moved to the Boston area in 1988 to earn her college degree. She received her B.S. in Computer Science and worked in high-tech and marketing industries for 18 years. Currently, Allie works for the Hemophilia Federation of America (HFA) as a Development Manager. Allie lives in North Andover, Massachusetts, with her husband and their two sons. Ziva Mann was born in Australia, grew up in New York and is currently raising a set of Yankee, Red Sox and Melbourne Swans fans in Massachusetts. She is the author of "Just A Boy", a book written for children with bleeding disorders, and the editor of a collection of essays written by fathers in the bleeding disorder community. She works on patient-centered design with Cambridge Health Alliance and Harvard's Center for Primary Care, helping primary care clinics partner with patients. Ziva lives in Newton, Massachusetts, with her husband and their two wonderfully improbable sons.