Learning your child is ill is extremely difficult and the path to finding out what he/she has may have been a long process particularly with rare diseases. During this time all of the focus is on finding an answer and ways to help your child. Receiving a diagnosis for your child can spark a new range of emotions. These emotions may include: shock, denial, anger, despair, and hopelessness. These feelings are all responses to grief. Grief is often used to describe the feelings associated with the death of a loved one. When you receive a diagnosis for a child you also experience a loss, the loss of a healthy child. It is important to know that all of these feelings are normal and you are not alone.
Learning to live with a child that has a PND brings with it new challenges for every member of the family. It will take time to adapt to these changes. Educate yourself as much as possible about your child's disease. Reach out to other parents. Develop a strong family - professional team. Don't ever be afraid to ask questions. Take one day at a time.
Having a physician who is familiar with PND's is extremely helpful. Due to the rarity of PND's there are few physicians who have actually seen children affected by each specific disease. The PND Medical and Scientific Advisory Board is comprised of doctors and researchers who have experience with PND's. They are available to help other physicians and families who need further information. Please refer to the M&S link on this site for their contact information.
We want to try to provide as much information as possible that will help you to cope.
Other PND Families The PND Association maintains an international database of families affected by PND's. If you would like to be put in contact with other families who have a child with the same diagnosis please join the PND Association and answer yes to this question.
Family Voices- a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs. www.familyvoices.org
Family Village- global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support. www.familyvillage.wisc.edu
National Early Childhood Technical Assistance Center - supports the implementation of the early childhood provisions of the Individuals with Disabilities Education Act (IDEA). There mission is to strengthen service systems to ensure that children with disabilities (birth through five) and their families receive and benefit from high quality, culturally appropriate, and family-centered supports and services. http://www.nectac.org
Click here for additional information and links to other helpful sites
This website is intended to provide information. It is not intended to, nor does it, constitute medical or other advice. Readers are warned not to take any action with regard to medical treatment or otherwise based on the information on this website without first consulting a physician.