Ethan Lieber is a 1-in-170,000 kid suffering from a condition so rare that just 500 boys in the United States share the diagnosis: Hunter syndrome. A new gene therapy offers hope, but his parents find themselves in a race against the clock and a disease that, unchecked, will begin robbing their 4-year-old of the ability to walk, talk and recognize them in the next year and will kill him by the time he's a teenager.
Shot and edited by Scarlett Kuang. Read more at The Philadelphia Inquirer