Parents of Pediatric Patients

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.
• Issues for Parents of Pediatric Bone Marrow Failure Patients
  Learn from an expert. Dr. David Margolis, a pediatric hematologist and aplastic anemia expert, answers all the questions parents want to know about bone marrow transplants, immune suppressive therapy, side effects, school, sports, getting vaccinations and much more. Read the transcript and watch the video.
• 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)

• Resources for Parents
  Be sure to check out the additional resources for educational, emotional and financial support for you and your family.