Pooling Blood: A journey of two girls with hemophilia and their parents’ struggle to keep them alive

Comments

1. Guest says

   May 21, 2014 at 12:00 am

   This is such an inspiring story. I could hardly put it down. What a remarkable family. Their story is so well written, that in no time at all you feel like you know them. They are remarkable people.

2. Guest says

   June 11, 2010 at 12:00 am

   Hemophilia is a horrible disorder which has a high mortality rate. \\”Pooling Blood: A Journey of Two Girls with Hemophilia and Their Parents’ Struggle to Keep Them Alive\\” tells the story of D’Ambrosio family as the two parents face the challenge of their daughters fight with hemophilia, a disorder which can turn the simplest cut into a life threatening incident. \\”Pooling Blood\\” is a riveting story that sheds light into the many challenges that hemophilia brings into life.

3. Guest says

   May 2, 2010 at 12:00 am

   Hemophilia is a rare and frightening congenital disease among boys, but among girls it is practically unheard of. In fact, it is estimated that there are fewer than ten girls in the United States with a severe bleeding disorder, known as Factor V deficiency, and in wonderfully intriguing unflinching prose, Cheryl tells us the story of two of them. Teresa and Maria will capture your heart, as they did Cheryl’s, in their daily struggle to grow up and live with a life threatening condition. Cheryl’s story begins with finding herself divorced and alone at age thirty five in Seattle. A few awkward dates with Tony, an architect, and Italian chef, who happened to be a single father of two young girls, gave her only a few clues as to what would happen next. Do you believe that one woman can make a difference in the world? Do you believe that one woman can persevere in a life and death struggle against enormous odds through wit and willpower? Do you believe that love and kindness conquers fear and indifference? Do you believe in ghosts? If not, this intelligent, personal, touching narrative will expand your world view and improve your faith in the human race. Cheryl’s remarkable journey contains many lessons and also raises many questions of a deeper nature for us all. Learning how to prevent a simple nose bleed from turning into a life threatening medical emergency is not something that everyone will need. However, learning how to acquire the knowledge and reasoning to become your own health care advocate is something that many will need and most will benefit from. Cheryl and Tony’s ongoing battle on the front lines with the health care system, hospitals, providers, and insurance companies is a timely wake-up call for everyone. Cheryl’s lessons learned as a health care advocate for her step daughters who are now adults, provide a recipe for parent/patient/provider teamwork that should become a model for treatment of chronic conditions. Indeed, thistrue life narrative lays down a roadmap that will benefit patients, parents, practitioners and institutions alike. Finally, Cheryl’s story of Teresa and Maria issues a challenge to our best and brightest medical, pharmacological, and genetic researchers that their work will not be done until they find a cure for even the rarest of human diseases. In fact, I would remind our scientific community that miracles and breakthroughs often hide in such places. Someday I want to see those transgenic pigs fly, and I want to see Cheryl’s dream become a reality. Cheryl’s story provides the inspiration. Dr. Richard A. Hull, Ph.D.

4. Guest says

   April 29, 2010 at 12:00 am

   The courage and willpower of this family is beyond what most of us can ever comprehend. I’ve worked for many years recruiting blood donors. The importance of donating blood is also something many us don’t comprehend. Volunteer blood donors help save lives! By reading this book you’ll discover even more why that is so important! Thank you, Cheryl and family for giving us your family story.

5. Guest says

   April 24, 2010 at 12:00 am

   In June of 1993, Cheryl married Tony D’Ambrosio. She then became the step-mother to two girls with severe Factor V Deficiency, a very rare genetic bleeding disorder equally affecting both males and females. Cheryl may have been \\”clueless in Seattle,\\” but she was not the only one to be clueless about bleeding disorders in women. Prior to that era, general awareness was only beginning to emerge about this phenomenon. Because hemophilia A and B are sex-linked disorders occurring predominantly in males, bleeding disorders in women had been largely under-examined, even within the bleeding disorders community. Pooling Blood is Cheryl D’Ambrosio’s personal account of raising two girls with a severe bleeding disorder. She describes in vivid detail the overwhelming stress experienced by her family in view of the consequences of the girls’ Factor V Deficiency. D’Ambrosio’s family had to cope not only with bleeding episodes and their complications, but the inability of health care teams they encountered to respond appropriately to various medical crises. Ms. D’Ambrosio, a devoted caregiver, eventually became a staunch champion of greater awareness and better treatment of bleeding disorders in all girls and women. She has helped create an effective social networking and advocacy base for the entire community. She makes us all aware of the need for enhanced communication within our health care system and need for women with bleeding disorders and their families to strive toward self-empowerment. D’Ambrosio’s narrative is enlightening for all readers. It is particularly thought provoking for all health care professionals, not only those in the bleeding disorders field. It provides all interdisciplinary health team members with insight into what it is like to live on \\”the other side,\\” as a patient and family member. After reading this account, we might all emerge a little less \\”clueless.\\” Jacqueline Lefkowitz, LCSW-R, MA, MSW Master Clinician Social Worker New York Comprehensive Center for Hemophilia and Coagulation Disorders New York Presbyterian Hospital-Weill Cornell Medical Center

6. Guest says

   April 12, 2010 at 12:00 am

   It’s rare that I pick-up a book and read it from cover to cover in one sitting! This touching chronicle by Cheryl D’Ambrosio is a story that everyone needs to know about and is a must read for all with a chronic or life threatening disorders. Like most excellent books it touches ones full scope of emotions! The general public will find the book a wonderful read! It’s even more important for those in the medical profession to read this book! It’s moving story about a family, (father/stepmother) with two daughters, Teresa and Maria that have a rare bleeding disorder, factor V deficiency. It’s a touching account that includes an understated but tender love story! A story of love, devoted care giving, dedication, one life threatening event after another and difficulties within our medical community. Especially true concerning the treatment and recognition of female bleeding disorders. With the all the struggles that Tony, Cheryl and the girls have experienced, they have been able to go forward. For example, after one serious medical event after another, youngest daughter Maria has gone on and received her Masters in Architecture from the University of Washington. She has following her fathers footsteps now has a successful career as an Architect! As a person with severe type A hemophilia, I can so identify with the many prevails in dealing with emergency rooms, interns, charge nurses and others in the medical field. This exasperating and sometimes dangerous situation mirrored my parents and my own difficulties especially from the 1940’s through the 1970’s. \\”Pooling Blood\\” and it’s author Cheryl D”Ambrosio illiterates the significance of being informed about a medical problem and the importance of being your own advocate. Tom McIntyre Vice President of Bleeding Disorder of Washington (BDFW)

7. Guest says

   April 9, 2010 at 12:00 am

   Cheryl married a widower with two young daughters with a severe bleeding disorder, similar to hemophilia. One of the girls was brain-damaged secondary to bleeding in her brain. I doubt that Cheryl had any idea what she was getting into, what a tremendous amount of sacrifice and sleepless nights would be required, but she rose to the challenge, great though it was, and still is. For the common hemophilias, better treatments have been available for decades, freeze-dried extracts of plasma, suitable for self-injection at home, made by pharmaceutical companies at a reasonable profit. But these girls have a rare form of hemophilia, an \\”orphan\\” disease, a small market, not enticing for drug development. These girls can be treated only with whole plasma, the liquid part of donated blood, which is clumsy and even dangerous to use outside clinics and hospitals. The difficulties encountered right now in getting treatment for the girls are similar to the difficulties faced by patients with the common types of hemophilia fifty years ago, and long since overcome. This memoir reminds us of the burdens borne by parents of children with serious medical problems, especially the unusual ones. It will serve its purpose if it reminds us all to be kind and considerate, to the children, to the parents.

8. Guest says

   April 7, 2010 at 12:00 am

   \\”Pooling Blood,\\” by Cheryl Nineff D’Ambrosio, is an amazing book. It relates the personal story of two girls with bleeding disorders, and the many challenges their parents face as they try to obtain proper treatment for their girls. The book is also an excellent source of valuable, potentially life-saving, information about navigating a health care system that is frequently unprepared to treat bleeding disorders in girls. Cheryl recounts the many life-threatening episodes of bleeding her daughters experienced, and the frequent battles with health care professionals who have little or no experience treating such conditions. All too often, the medical staff chose to ignore the information provided by the parents, thereby putting the girls at serious risk. These frightening yet uplifting personal stories are the basis for Cheryl’s drive to inform and advise patients, families, and the medical professionals who treat them. This book should be required reading for all health care providers.

9. Guest says

   April 3, 2010 at 12:00 am

   Before I read Pooling Blood, I had no idea of the sheer terror children and their parents experience with hemophilia. Cheryl takes you there. She’s lived it and understands. But that’s not all. Cheryl takes the reader behind the scenes to reveal the gaps in the medical community that make the terror even worse-the little inconsistencies, the slightest breach that might mean the difference in life and death. She knows. But even that’s not all. Cheryl took it upon herself to guide the inexperienced on a path through the maze that only one with experience can know. She worked for change. But that’s not all either. Cheryl created processes and helpful tools for people to create a new support system and lend more sanity to what, at times, seems quite insane. Thanks to Cheryl’s hard work, Pooling Blood will save many people a lot of stress and agony when dealing with this condition and will, in fact, save lives. She did not work this hard or write this book for thanks and recognition, but she certainly deserves it.