Young Sam Berns is telling his life story on the big screen this week at the Sundance Film Festival.
Sam has a rare genetic condition called Progeria. Simply put, it's a fatal, premature aging syndrome that affects one in every 4-8 million newborns.
Most children with Progeria don't live past 13, dying from premature heart disease, heart attacks or strokes. Sam, however, turns 16 this year.
Thanks to Sam and his parents Drs. Leslie Gordon and Scott Berns, who refused to despair when they were given the heartbreaking prognosis when their son was two, huge strides have been made in Progeria research in the past 14 years.
They founded the world's leading institution on Progeria right here in Peabody, which is now led by Sam's aunt Audrey Gordon, identified the gene causing the condition, created the first drug trials for treatment and discovered that Progeria is linked to the entire human aging process.
Their story will be told in an HBO Documentary entitled "Life According to Sam," which premieres at the Sundance Film Festival on Jan. 21. The festival takes places in Park City, Utah from Jan. 17-27.
The 94-minute documentary is directed by Sean Fine and Andrea Nix Fine of Fine Films.
"PRF is thrilled to receive this recognition. With the release of 'Life According to Sam,' global awareness of Progeria and PRF's work will reach new heights as we advance our mission to find the cure," PRF says in an announcement.
"The accomplishments of the Berns Gordon family and all the families that make up the PRF community have deeply moved and inspired us. We were honored to be able to capture this incredible story over the last three years and we couldn't think of a more exciting venue than Sundance to premiere this film to the world," said the Fines.
"Life According to Sam" is one of 16 films selected to screen in the U.S. Documentary Competition category of the festival.