(I love my big sister for so many reasons, including her desire to always take care of me. Today was one of those days where I had moving from one thing to the next without any break. I checked in with her while rushing from one meeting to an evening class and lamented that I still had hours of writing once I got home and I also had no idea what I was writing the blog about tonight. She piped up that she'd find something and it would be waiting for me when I got home. And it was! Thank you, Jeannie! I love you!-- Melinda)
For some reason, I’ve always been fascinated by those children dealing with progeria, the genetic disease that ages them rapidly. We all have this particular protein that causes us to age, but those with progeria have this protein in overabundance. It makes me think of the literary and movie character, Benjamin Button (the movie was loosely based upon a short story by F. Scott Fitzgerald, and, yes, I was an English major), but in reverse.
Progeria is very rare, with currently only 100 cases worldwide at present and a total of 250 at any one time. Its name is derived from Greek and means "prematurely old.” The normal life span is 13 years, but some have lived to at least 20…which brings me to Sam. Tonight on HBO, the documentary on his life, "Life According to Sam," premieres. A hit at many film festivals, including Sundance, it follows the personal story of Sam Berns and his family, who have dedicated their lives to find a cure for progeria. His parents are doctors who started the Progeria Research Foundation. Already , the foundation has led to the discovery of the “progeria gene” the creation of a drug that aims to slow the progression of the illness.
The film also reveals Sam and his family’s commitment to making the most of their time together. As his mother says, “You are handed something and what you do with it is what matters and that’s what Sam is doing,'” As the filmmakers discuss: “It is easy to think that if your child was given a fatal diagnosis of probable of death by age thirteen, you would fight and be resilient. But would you? And if you did throw every waking hour into finding a scientific breakthrough, how would you balance the time you spend with the son you are trying to save? Boiled down, these are the same quality of life and love decisions that we all are making in our lives. And the kinds of decisions that we ultimately know we will judge our own life by when we reach its end. Sam’s life is really the path of all our lives. Even on a scientific level, the same abnormal protein in Sam’s body is actually at work in all of our own, aging us day by day. Perhaps one day we will look back at this remarkable boy and know that what cracked the code to aging all started with a boy named Sam."
Sam turns 17 next week.
BREAKING NEWS! YOUR GIFT IS GOING TO BE DOUBLED! (From Sam's parents): After seeing Life According to Sam, Robert Kraft has issued a Matching Gift Challenge to help Sam and his friends. The gift you send will be matched dollar-for-dollar, up to $500,000, from now through October 23rd so we can put $1 million to work and give every child with Progeria access to possibly life-saving drugs. LET’S DO THIS!
-Jeannie Newman
Oct. 21: The Progeria Research Foundation
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