This isn’t really a blog about movies, but there’s something we just had to share with you all. A group of us from the NICU just saw a documentary called “Life According to Sam“, and here’s a short review: it’s absolutely fantastic and everyone should see it as soon as possible.
We must admit that we were predisposed towards liking this film, which introduces us to Sam Berns and his family. Sam has progeria, and his family has been working hard to find a treatment and a cure. We’ve met Sam’s dad before (Dr. Scott Berns, who does such wonderful work with the March of Dimes in the United States), and we figured anything involving him would be great. But it is more than great.
First off, it’s got a wonderful leading man. Sam is both eloquent and inspiring. In perhaps one of the most compelling moments of the film he says, “I didn’t put myself in front of you so you could feel bad for me; I put myself in front of you to let you know you don’t have to feel bad for me.” His vivid appreciation for his life, his loving relationships with his family and friends, his wit and intelligence, his engagement in so many interesting activities … all of that made us want to head right out of the theatre and join a marching band. (If you see the film, that’ll make sense.)
Also, Leslie Gordon (Sam’s mom) is our new hero. We were so impressed by her insistence on making the drug available to all participants in the trial; she didn’t feel it would be ethical to offer a placebo, even though it might have made the trial more acceptable within the medical community. We applaud that commitment. And we applaud her commitment to all children with progeria, which led her to seek out children around the world and offer them access to the treatment that was part of their trial. Because of working in the NICU, we often see things through our NICU lens, and we feel heartsick at times when we think of what we can do for premature babies here, versus what is available for families in other countries. Leslie Gordon reminded us all that we can’t forget about the social justice element of health care; it’s absolutely possible to share advances if we make sharing a priority.
It will be playing on HBO later in the year, but if you get a chance to see it before then, GO. You will love it.
Learn more about and support the Progeria Research Foundation, founded by Leslie and Scott.
