There is nothing more devastating to a parent than to see your child suffer from a serious disease. For every parent who has heard these words, "Your child has aplastic anemia (MDS, or PNH)", it is a moment frozen in time and a life changing event.
Whether you've just found out that your child has a bone marrow failure disease, or you have been managing your child's disease for many years, this page provides tips, information, and resources that can help. We will continue to include additional information, so check back regularly.
- Is your child recently diagnosed?
Learn tips for taking control or your child's care and getting the support you need.
- Watch the Bone Marrow Garden with your child and share with friends and family members who want to know more about your child’s bone marrow failure disease. If your child will be out of school frequently, feel free to share the link and children’s activity pages with your child’s teachers so they can help classmates learn more about your child’s disease.
- Should your child participate in a clinical trial? Until recently, children were rarely included in studies of medical treatments. Yet the only way to examine the scientific value of a new therapy for children, is by conducting a pediatric clinical trial. Learn more about why clinical trials should include children and about the safety of pediatric clinical trials.
- Issues for Parents of Pediatric Bone Marrow Failure Patients
- Listen to Dr. Kenneth Cooke, Director of the Johns Hopkins pediatric bone marrow transplant program help kids understand bone marrow failure syndromes in the video, Bone Marrow Failure Syndromes: Helping Kids Understand
- Watch Dr. Inga Hoffman, MD, PhD, of Boston Children’s Hospital discuss MDS in Children: What Parents Need to Know
- Supporting Students with Bone Marrow Failure Diseases: A Guide for Parents & School Personnel. Sending your child back to school after treatment for aplastic anemia or another bone marrow failure disease can be scary and overwhelming. To help make this process easier, we have created Supporting Students with Bone Marrow Failure Diseases. This guide provides the information you and other school personnel need to know to create a safe and supportive school environment for a child with a bone morrow failure disease. It includes basic disease information, an overview of the physical, emotional, and learning challenges a student may face, and tips and guidance for supporting positive re-entry into school. Print out a copy for yourself, and share a copy with your child's teacher, school nurse, school administrator, and other school personnel. Use it as a guide for creating a coordinated care plan. Download and print a copy (pdf)
- Helping Young Bone Marrow Failure Patients with Making a Successful Transition Growing up and becoming an adult is not without its challenges, especially for young people with bone marrow failure. This webinar is developed to help youth, young adults with bone marrow failure and their families be better prepared for adulthood, especially the move from pediatric to adult-oriented health care. Drs. Monica Bessler and Kim Overby discuss key issues for patients in this age group and share strategies for how to make the successful transition from pediatric to adult care. Watch their recorded presentation.
- Download Transitions—Changing Roles for Families and Youth check lists. This check-list identifies key tasks that young adults should be able to do as they make the transition out of pediatric healthcare. How comfortable are you as a parent or your child as a patient, with these changes? Checklists are in English and Spanish.
- Resources for Parents
Be sure to check out the additional resources for educational, emotional, and financial support for you and your family.
This page generously sponsored thanks to a gift from Liberty Mutual Insurance Group in honor of Coach of the Year Tim Beck who dedicates this gift to his nephew, Bradley Richard, a 13-year aplastic anemia survivor.