March to the Sound of your own drum

Sam’s Poster

The American philosopher Henry David Thoreau, was probably the first one to write this now very pervasive tenet:  “If a man loses pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured, or far away. ” This saying has taken on a more modern interpretation as more and more people are coming out of their closets, choosing to lead their lives out in the open despite their differences and deformities forcing society to accept them as they are.

Yes…“different strokes for different folks” has become the modus operandi in our Western societies, social forums and  cyberworld contributing to the creation of  a global community which allows those who do not fit the standard mold to live among “normal” people who eventually learn how to overlook their  differences in order to see them as these people see themselves…

I was on a long haul plane flight between Paris and San Diego a few days ago trying to occupy my time by exploring the different options on the entertainment system. After going through the movies, I stumbled upon the documentary section and started scanning the different titles in hopes of discovering one that would catch my attention and get me caught up on American life. One such one struck my eye entitled Life According To Sam. The smiling boy on the picture ressembled someone who was suffering from a rare genetic disease called Progeria (Hutchinson-Gilford Progeria Syndrome)which causes its victims to age at a very dramatic pace. I couldn’t resist the smiling invitation to enter into Sam’s world and discover his life and how he and his parents, both medical doctors, turned a seeming tragedy into something positive and influential for many people in their community and the nation at large.

Sam and his proud parents

While his parents were searching desperately and relentlessly for a cure to his disease  as soon as they found out what they were up against when Sam was diagnosed with the disease at 15 months, Sam grew up to be a practically normal kid who loved building stuff with his lego sets, enjoyed playing the drums in his high school marching band, became an Eagle Scout and openly supported the local sports teams in Boston. His physical deformities were offset by a brillant mind and an outgoing personality that made people see beyond his exterior shell for the person he really was inside. His optimism and intelligence won him many friends and enabled him to excell in his studies and grow into an extraordinary teenager who inspired all who met him…including me who was meeting him for the first time.

Because of the extraordinary nature of this young boy and his dedicated parents, HBO produced a documentary in their honor entitled Life According to Sam. It was directed by Sean Fine and Andrea Nix. The documentary follows the parents’ courageous fight to save their only son from this rare and fatal ageing disease. Their faith and determination allowed them and their research team to not only identify the defective gene but also to find a drug to reduce the devastating effects of the disease and prolong the lives of those children suffering from it who came from all around the world. Here’s the trailer:

This extraordinary documentary has won many awards including and was introduced at the 2013 Sundance Film Festival:
Peabody Award
Chris Award
Award Winner, Heartland Film Festival
Audience Award, Nantucket Film Festival
Best Storytelling Award, Nantucket Film Festival
Best Doc Feature, Rhode Island Film Fest
Best of the Fest, AFI film festival
Audience Award, Woods Hole Film Fest
Grand Winner, Mountainfilm Festival
Indomitable Spirit Award, Mountainfilm Festival

NIH Director and Sam Berns

Because of this documentary, Sam became  known outside of his closeknit community and aroused people’s curiosity and desire to get to know him better. Consequently he was invited on many talk shows and  public forums to speak. The first one to invite him was Geneticist and physician Dr. Francis Collins, director of the National Institute of Health who wanted Sam to participate in his talk “We Need Better Drugs Now“. Then Sam appeared on the talk show circuit via the  Katie Couric show on October 13, 2013:

Lastly, he was asked to speak on Ted  Talks about his philosophy of life. As many of you know, TedTalks.com is a site dedicated to spreading good ideas around the world. It began in 1984 as a conference where Technology, Entertainment and Design crossed paths, and today it invites speakers from around the globe in more than 200 languages to speak about almost any topic from science to global issues. What better forum to advertise Sam’s special and inspiring philosophy of life:

It is so amazing that this young boy begged people not to feel sorry for him but to look beyond his exterior shell to discover his true identity and to rejoice with him for leading a very happy life. This reminds me of  Harold Kushner’s book:  When Bad Things Happen to Good People. His son also suffered from Progeria and was also blessed with a beautiful mind. He just couldn’t understand why fate would allow this to happen. His final conclusion was that underneath those dark clouds, the sun is still shining.

Unfortunately Sam passed away on January 10, 2014 but his legacy lives on. I’m hoping that I did a little bit to help in this endeavor through this Blog Post and through the Research Foundation in his honor.

RIP Sam!