“Yuna. Look at that. Who’s that?” Soo-Kyung in Jae Lee had trouble believing it when doctors told them their daughter, Yuna, may have a rare mutation on a crucial gene for brain development. Soo-Kyung had been doing research with that very same gene for years. It seemed too big a coincidence. When she saw their findings were correct, she had no choice but to accept it. Their daughter had FOXG1 syndrome, a condition so rare that only about 300 people worldwide are currently known to have it. This devastating neurological disorder can cause major developmental and cognitive disabilities. And for years, Yuna’s symptoms included seizures and eating problems so serious that every day Soo-Kyung worried she might die. Now Soo-Kyung and her husband, who’s also a researcher are working together to study the syndrome. They hope that someday their research will lead to treatment options for some of the symptoms. At 8 years old, Yuna can’t walk, still wears diapers and is severely developmentally disabled. “Water? Water? Water, yeah.” But every day the Lees work painstakingly with Yuna. And they say she is making gradual progress.