Progeria-Afflicted Teen Subject of 'Life According to Sam' Passes Away
At the 2013 Sundance Film Festval, the documentary Life According to Sam (shortlisted for the Academy Award for Best Documentary) highlighted Hutchinson-Gilford progeria syndrome as it afflicted teenage boy Sam Berns and his medical doctor parents as they attempted to take all the right steps to research, test and implement a cure. For those who don't know, progeria is an extremely rare genetic condition (one in 8 million children get it) that accelerates the aging process in children from birth until their premature death around 13 years old. Sadly, THR reports the charming Sam passed away this past Friday at the age of 17.
Sean Fine and Andrea Nix painted an educational and engaging portrait about Sam and progeria with their aforementioned documentary (available on HBOGO). A disease so rare needs champions like this so a cure can be found. As I type this, WordPress doesn't even regard progeria as a real word, so more people need to know about it. Sam has been inaccurately referred to as a real-life Benjamin Button because of his young age but geriatric appearance, but that's wrong since that title character aged in reverse. The disease has more in common with Robin Williams' character from the film Jack, directed by Francis Ford Coppola.
Sam's affliction and his death as a result is sad, but his condition pushed his parents Leslie Gordon and Scott Berns to form The Progeria Research Foundation, which created some promising results in an experiment for a cure that included a large chunk of the small number of children with progeria from around the world. The film just had a Hollywood style premiere in New York this past October, where Sam watched the film in a room by himself before entering the actual theater with a napkin that had the word "Awesome!" written on it. New England Patriots owner Robert Kraft has asked Sam to be an honorary team captain for the team's playoff game on Saturday, an opportunity that Sam sadly missed. Many were touched by this film, and our thoughts go out to Sam's parents during this difficult time. Rest in peace.