Sam Berns is 16. He looks 61. If you happen to have access to HBO, you might have caught a small glimpse of what it means to be in his body by virtue of the documentary, "Life According to Sam." It aired yesterday evening on the cable network.
Sam has progeria, also known as Hutchinson-Gilford Progeria Syndrome. It's a rare condition that, as is noted on the Social Security Administration website, usually claims the lives of those who have it by their early teens. Some with the disease have been known to live into their 20s, but those are the rarest of the rare cases. There are believed to be fewer than 300 sufferers with progreria in the entire world.
Progeria is characterized by what one reporter has described as a fast-forwarding of the aging process.
Because it is fatal, it may come as no surprise that it is a condition that the SSA rates worthy of being granted a compassionate allowance. That means applicants with one of 200 identified conditions get fast-track approval of Social Security disability benefits. Other illnesses on the list include various forms of cancer, Alzheimer's and Lou Gehrig's Disease.
While "Life According to Sam" tells the story of this teenager's effort to live as normal a life as possible, the real focus of the tale is on his parents' (especially his mother's) unflagging efforts to find a drug that might help him and other progeria sufferers.
The documentary tells how Sam's parents started the Progeria Research Foundation, and how, in 2003, the organization discovered the progeria gene. But the drama hits maximum drive when a drug trial based on the PRF's research is launched.
Not having seen the film, we can't offer any statements. We can only rely on the critique of one reporter who says that what is shared "is its own unanticipated and refreshing form of hope."
Source: WBUR.org, "Documentary Follows Foxborough Family's Search For Progeria Cure," Erin Trahan, Oct. 20, 2013