In 2002, Jayson and Michelle Whitaker, the parents of Charlie Whitaker, their then four year old son, faced a decision that would test the bounds of both modern medicine and the ethical limitations which govern it. When he was twelve weeks old, Charlie had been diagnosed with Diamond-Blackfan Anemia (DBA), a rare blood disease which prevents the body from creating sufficient red blood cells; requiring frequent treatments which prove painful and exhaustive for both the recipient and in this case the helpless, on-looking parents.
To stay alive, Charlie received recurring blood transfusions and almost nightly drug infusions. Distraught with their son’s ailment, traumatizing treatment and the