ABSTRACT
Whenever an infant is born with a genetic, metabolic, special/chronic health care need, and/or a disability, parents, family, and friends are faced with trying to learn new and important information while dealing with the loss of their “perfect” child. It is somewhat di•erent if the diagnosis or onset occurs later in childhood or adolescence because it can mean that not only do parents, family, and friends have to deal with all of the issues and changes, but the child or adolescent does too. Neither scenario is easy nor will life ever be the same as it had been or as it was anticipated in either case.
