One of the more heartwarming moments at last year’s Sundance Film Festival came at the end of the documentary “Life According to Sam.”
The documentary, by Sean Fine and Andrea Nix Fine, told the story of Sam Berns, a Masssachusetts teen suffering from progeria, a rare genetic disorder that causes rapid aging. The film showed Berns trying to live a normal life in spite of his disease, whose victims have an average life expectancy of 13.
After the movie screened at Sundance, moviegoers were treated to a live appearance via Skype by Berns and his parents, doctors who have led the fight to get more research done on progeria. Berns was funny, charming and quite resilient.
In November, the Utah Film Center awarded Berns with its Kim Peek Award, given to people who further the depiction of disability in the media. Berns again appeared via Skype, making the assembled audience laugh and weep in turn.
On Friday, the day before he was scheduled to serve as an honorary captain to the New England Patriots (his favorite team), Sam Berns died of complications related to his progeria. He was 17, and from all appearances packed more life into those years than most of us do.