Watching: Our Curse

Overview

The film is a personal statement of the director and his wife, who have to deal with a very rare and incurable disease of their newborn child – the Ondine’s Curse (also known as CCHS, congenital central hypoventilation syndrome). People affected with this disease stop breathing during sleep and require a lifetime mechanical ventilation on a ventilator. The film shows the process of taming fear associated with the disease.