LIFE ACCORDING TO SAM

In the same manner that movie theaters hand out glasses when you go to see a 3D movie, then you should be giving a box of Kleenex if you are ever fortunate to see this heartbreaking about one exceptionally wonderful and precocious teenager. The fact that Sam’s story is so remarkably moving is not so much about the prognosis of his medical condition but because of his seemingly limitless charisma and the sheer love that binds his family with their unwavering optimism and determination.

Sometime in the mid 90’s two young medical students at Brown University met, fell in love, married and then on October 23rd 1996 they had a baby.  There names were Leslie Gordon and Scott Berns, and Sam was their child.  By the time he was 2 years old it was obvious to them that something was amiss with Sam and after a great many tests and examinations he was finally diagnosed with having Progeria. This is fatal disease that is so rare it that it only affects 1 in 4 million, and at any time there are just some 200/250 children in the world suffering from it.

It is essentially a rapid-aging disease resulting in stunted growth, elderly looking skin, brittle bones, and other symptoms associated with advanced age. Inevitably, children with progeria die from a heart attack or stroke in their early teens. There is no known treatment or cure for this.

Instead of falling apart at this devastating news his mother Leslie in the middle of her pediatrician training simply changed track and started to do genetics research to investigate the disease to help find a cure and buy as much time possible for Sam and other kids.

The movie starts when Sam is now 13 which is the median age for children with his condition. His parents have raised $1.25 million and launched the Progeria Research Foundation which has successfully discovered the progeria gene.  This in turn led them to doing clinical trials of a promising drug called lonafarnib on 26 patients.

As the trial progressed more patients came forward but under the strict rules that are laid down by the authorities Leslie Gordon and her team had to reluctantly turn them away with a promise that if they were successful and the drug was approved then they would be amongst the first to have it prescribed. That is little comfort to a child who simply does not have the luxury of time to spare or waste. The Team had already made a controversial decision not to give any of the trial patients a placebo as is the norm as they considered that somewhat immoral in this situation, not a view shared by the Medical journals whose opinions were paramount to the outcome of the trial.

When the trials are over and the very encouraging results are written up in a report, they are rejected by the first two Journals. The third one asked for some clarification and a rewrite, and then finally after another interminably long wait, decides to publish it. This not a cure, but the very first glimmer of real hope as it did show that it reversed changes in blood vessels that usually lead to heart attacks and strokes, which was a major step forward.  The next study which is now under way is to see whether combining lonafarnib with two other drugs will work even better. 

Throughout the years the film follows the mother’s involvement spearheading the research it also witnesses Sam graduating junior High with honors and it is obvious that his wisdom is not restricted to his academic work as he is uncharacteristically profound and optimistic for a person of his age.  His parents rightly encourage him into accepting that everything is within his reach and worth trying for, and when the bandmaster hesitates about Sam’s strength to fulfill his dream of playing drums, they just quietly find a solution.

We see an infectiously happy young man enjoying life to the fullest despite the limitations his health may try and impose on him.  He wants to prove that he is better than the norm, and he does by going against all predictions and celebrating his 14th, 15th and 16th birthdays during the course of this documentary.  His are the words that we hear at the start when he explains why he agreed to be a part of the film. He says that he didn’t put himself in front of us to make us feel bad about about him.  He did it so that we wouldn’t feel bad, but actually appreciate who he really was.

He certainly achieved that.  His example, and that of his parents, will probably render you speechless. His mother has won countless awards for her work (she is also a physician on the faculty of Boston Children’s Hospital and Brown University), and you know that there is only thing she will ever differ from Sam on. It’s when he is calmly discussing his impending death like the wise old soul that he is and he says his mom will be able to let go of her arduous search for the cure and rest once he has gone.  We know that she never will.

This documentary by Oscar winning filmmakers Sean Fine & Andrea Nix is due to be shown on HBO soon, and is currently available on Amazon VOD.

★★★★★★★★★