Greenberg passed away last Thursday at the young age of 20, still looking like a toddler. Developmentally, she stalled at the age of 5, never weighing more than 17 lb. (7.7 kg). Her condition, which she shares with a handful of other people around the world and which kept her both physically and mentally stunted, was labeled Syndrome X by her doctors, but the X was merely a stand-in for unknown. Although it was clear that Greenberg — eventually called “a child frozen in time” — was developmentally abnormal, scientists, researchers, and physicians could not diagnose why.
Greenberg’s doctors started with the usual suspects. The slow growth of her eyes and ears suggested a congenital condition, but she came back negative for every birth defect known. When she turned 3, she started developing all sorts of physical breakdowns and diseases, from seizures to long-lasting pneumonia and even suffering a stroke.
That was when Greenberg started seeing geneticists. Originally it was to determine if there was a possible explanation and treatment for her condition, but eventually, researchers transitioned to a larger undertaking: Could the girl who wouldn’t grow up hold the answer to a longer life? Her family was — and is — willing to let researchers find out. ”Brooke is the nucleus of our family. What if Brooke holds the secret to aging? … We’d like to help people. Everybody’s here for a reason. Maybe this is why Brooke is here,” her father, Howard Greenberg, told ABC News when she originally underwent testing.
“It was a pretty amazing genotype that she had, suspended development and lack of aging on the outside. It sounded pretty amazing, and the more I checked it out, the more interesting it became,” says Eric Schadt, the director of the Icahn Institute for Genomics and Multiscale Biology at the Mount Sinai Medical Center in New York City.