The Boy in the Moon (2011)

by Ian Brown

From Amazon: Ian Brown’s son Walker is one of only about 300 people worldwide diagnosed with cardiofaciocutaneous (CFC) syndrome—an extremely rare genetic mutation that results in unusual facial appearance, the inability to speak, and a compulsion to hit himself constantly. At age thirteen, he is mentally and developmentally between one and three years old and will need constant care for the rest of his life.

Brown travels the globe, meeting with genetic scientists and neurologists as well as parents, to solve the questions Walker’s doctors can’t answer. In his journey, he offers an insightful critique of society’s assumptions about the disabled, and he discovers a connected community of families living with this illness. As Brown gradually lets go of his self-blame and hope for a cure, he learns to accept the Walker he loves, just as he is. Honest, intelligent, and deeply moving, The Boy in the Moon explores the value of a single human life.

A Life Without Pain

A LIFE WITHOUT PAIN is an exploration into the day-to-day lives of three children who literally feel no pain. Three-year-old Gabby from Minnesota, 7-year-old Miriam from Norway and 10-year-old Jamilah from Germany have a genetic defect so rare that it is shared by just one hundred people in the world. Their parents must watch their every move, but even their vigilance hasn't shielded the girls from many serious, life-altering injuries. As we follow these families coping with this enormous challenge, we learn that pain is really a gift that no one wants, but none of us can do without.

From Netflix: Documentarian Melody Gilbert follows the daily lives of three girls -- a 3-year-old Minnesotan, a 7-year-old Norwegian and a 10-year-old German -- who share an extremely rare disease: congenital insensitivity to pain. Despite the efforts of their vigilant parents, these girls live in constant threat of bodily injury. This moving film was an official selection of the 2005 South by Southwest festival and was featured on "The Oprah Winfrey Show." 73 Minutes