When Donna Appell learned that her baby daughter Ashley suffered from a rare genetic disorder that would kill her in 30 years, she was told there were less than 30 people in the US who had been diagnosed with it and no one knew where to find them. Realizing that no one was going to help cure “just one child,” Donna set about forming an advocacy group and harnessing the internet to gather as many patients as possible who suffered from Hermansky-Pudlak Syndrome (HPS), which includes albinism, blindness, a bleeding disorder and often a fatal pulmonary fibrosis.
Filmed with intimate access over three years, the film follows Donna and her advocacy group as they travel to Puerto Rico and throughout the US in a race to fill a drug trial they hope could prolong her daughter’s life.
Produced and Directed by Maren Grainger-Monsen and Nicole Newnham. Check your local PBS listings and read more about the film here.