Nobody wants to get old, but that’s Sam Bern’s fate at age 16. The documentary “Life According to Sam” tells the story of this teenager’s life contending with progeria, a progressive disease that ages the body prematurely. The film plays Wednesday, July 24, at the Chilmark Community Center and Thursday, July 25, at the Harbor View Hotel in Edgartown as part of the Martha’s Vineyard Film Festival. After the screenings, Sam and his parents, Drs. Leslie Gordon and Scott Berns, will answer questions.
Diagnosed in 1998 at age two with an illness that, as one of the rarest in the world, affects fewer than 250 children worldwide, Sam Bern leads a life that is remarkably normal in some ways. He does well at school, goes to Dave Matthews Band concerts with his dad, and plays the snare drum in the marching band of his Foxborough hometown. At age 16, this articulate, down-to-earth youngster has already beat the odds that predict death from progeria by age 13 or 14. His physician parents, who were in their first year of residency when Sam was diagnosed, remain optimistic, suggesting, “Why wouldn’t we be?”
Rather than give in to an incurable disease, Dr. Gordon’s response to her son’s illness was to take action. She discovered that no definitive test existed for progeria, no research funding was available, and virtually no one was advocating for children afflicted with it. All that changed after Dr. Gordon and other family members raised $1.2 million and founded the Progeria Research Foundation less than four years after Sam’s diagnosis.
Since then, research led to discovery in 2003 of the gene whose mutation causes progeria. A clinical trial began, using a drug that had already been developed for protein abnormalities in other cases, and the race was on to help Sam and 27 other children delay an inevitable death sentence, mostly likely from heart attack or stroke.
Part of the effectiveness of “Life According to Sam” comes from the way directors Sean Fine and Andrea Nix examine the world of scientific research. To get Food and Drug Administration approval for a drug available to treat progeria, Dr. Gordon had to jump through many hoops. She was not willing to give part of the test population placebos, a conventional protocol that might have speeded drug approval but would have denied some children the possibility of immediate help.
Nominated for the Sundance documentary Grand Jury Prize and winner of the Nantucket Film Festival’s Audience Award, “Life According to Sam” does not sentimentalize the difficulties in Sam’s life and those of other children portrayed. Scenes of Sam and other children undergoing the extensive and painful medical testing involved demonstrate what children with progeria have to endure. The focus stays clearly on Sam and his parents, who demonstrate the meaning of heroism in the face of great challenge. One of the additional messages this film delivers is that the aging process triggered by progeria is the same one all of us undergo eventually. The more scientists can learn about progeria, the more they will uncover about the aging process in general.
Returning to the M.V. Film Center this week is “Unfinished Song,” starring Vanessa Redgrave and Terence Stamp. The restored director’s cut of Orson Welles’s thriller, “Touch of Evil,” plays in the Midnight@Ten series. Slow Food Martha’s Vineyard presents “Genetic Roulette,” a documentary about genetically modified food, at the center on Sunday, July 28.
“Unfinished Song,” Thursday, July 25, Friday, July 26, and Saturday, July 27, 7:30 pm, M.V. Film Center, Vineyard Haven. $12; $7 M.V. Film Society members. For information and tickets, visit mvfilmsociety.com.
“Touch of Evil,” Friday, July 26, and Saturday, July 27, 10 pm, M.V. Film Center.
“Genetic Roulette,” Sunday, July 28, 7:30 pm, M.V. Film Center.
“Life According to Sam,” Wednesday, July 31, 8 pm, Chilmark Community Center; Thursday, August 1, 8 pm, Harbor View Hotel, Edgartown. $16; $8 M.V. Film Festival members. For information, children’s programming, and tickets, visit tmvff.org.