A senior emergency doctor has launched a research charity after his daughter was diagnosed with an ultra-rare genetic brain condition affecting about 200 people worldwide. Prof Rob Galloway's daughter, Frankie, has DeSanto Shinawi syndrome for which there are no existing treatments. Galloway, who works at the Royal Sussex County Hospital in Brighton, described his daughter as "the most precious patient I've ever felt responsible for" but that despite his work he "didn't have a clue what to do".