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Yesterday night I watched a documentary with my mother, it was called ‘Life According to Sam’ and showed the life of Sam Berns, a kid suffering from progeria, and his parents, two pediatricians, one of whom started a clinical study for a drug that may help sufferers from progeria.

We were mesmerized. That kid, that fifteen year old kid, suffering from a rare and fatal genetic disorder (most don’t live beyond their thirteenth year), was so well adjusted, so happy, so clever. It was truly an inspiration, and made me feel both inspired to live life to the fullest, and ashamed, of my own little problems, that grow ever more minuscule in the face of what he had to go through. I was also very inspired by his parents, who, despite the difficulties, remained happy, good and optimistic, and raised such a wonderful child, giving him a truly happy life, albeit a short one. I must confess that when the movie just started I pitied them, and I pitied him, I thought it must be horrible, to be in this situation. But when I saw their wonderful family dynamics, and all the love that was shared between them, I realized this isn’t the case. Once he opened his mouth and spoke in front of the camera, he was so intelligent, so articulate, and so happy and hopeful. I understood that I figured it all wrong: that family was not miserable, for “having” to raise a disordered child, they were privileged to have known him, and to have felt and shared all that love and joy. 

There are a lot of lessons to be learned here, for me. Not to be so quick to judge, and not to be so judgmental in general; that what defines us are not the obstacles we face, but the way we handle them, and people who face adversities without succumbing to anger and pity, but instead use joy, love and laughter, have my utter and total respect; that a short life is not necessarily a wasted one, and this was important for me, as I am very anxious about growing older, and about death in general, we just need to find the happiness in our life, and strive to treasure every moment. Even when we get busy and focused, we should take some time each day to put things in perspective; and finally, that family is the most important thing we have, and we should not take that for granted.

After watching the film I googled Sam Berns, and discovered that he has passed away exactly a month ago, January 10th, 2014. It broke my heart. I knew he couldn’t have lived for much longer, but the film ended with him as a 17 year old, a brilliant student, dreaming of going to MIT. How I wish he could have fulfilled his dream. But I find comfort in the fact that despite all that, he had a very happy life.

I highly recommend watching this documentary, and here is a link to a short article about Sam, and how he became the “face of the disease” and made this rare condition (affecting only around two hundred and fifty children worldwide) more well known.

 

Leore Joanne.

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