The people who have to remember to breathe

"(Congenital Central Hypoventilation Syndrome) is a genetic mutation," 26-year-old Marissa Schain told Mic over coffee and pie in her native Brooklyn, New York. "When we fall asleep we don't get the signal in our brain to keep breathing."

The condition is rare, with roughly 1,000 cases known to exist worldwide. The mutation occurs sometime during fetal development on the gene PHOX2B, located on Chromosome 4. The disease is spontaneous, striking girls and boys at random. Thanks to modern technology, those living with the disorder today can have better outcomes than Hans, who's death provided Ondine's dramatic conclusion, but it is still far from easy.

"I was about three weeks old, my mom found me in my crib and I was blue," Schain said. "I was almost basically dead."

After that scare, Schain, like most people with CCHS, underwent a tracheotomy. The procedure outfitted her with a breathing tube that had to be hooked up every night to a clunky ventilator. "I was always known as the girl with the thing in her neck." Schain said. "You just get used to it."

While the system did keep her alive, the procedure makes CCHS patients more susceptible to potentially life-threatening infections like pneumonia. While Schain never had a major health scare, she jumped at the chance to dump the trach and the ventilator when she was 18 in favor of a set of pacemakers that stimulate breathing by sending electrical currents to her diaphragm.