Summary
Sam Berns was the subject of
the HBO documentary “Life According To Sam,” which documented his living with
what is formally called Hutchinson-Gilford progeria syndrome. He passed away
Friday night at the young age of 17 due to complications from the rare genetic disease,
which causes premature, accelerated aging. He was a student at Foxborough High
School and he played the snare drum in the marching band. He didn't
let the fact that he weighed all of 50 pounds or that the average life span of
someone with progeria is 13 years discourage him. He attended his school's
homecoming dance. And above all, he kept his head up. "All in all, I don't
waste energy feeling bad for myself," Berns said. "I surround myself
with people that I want to be with. And I keep moving forward." He died a
day before he was to be the Patriots’ honorary captain. "I loved Sam Berns
and am richer for having known him," Patriots owner Robert Kraft said.
"He was a special young man whose inspirational story and positive outlook
on life touched my heart."
Analysis
It’s always so heartbreaking
to see someone so young and full of life pass away. Progeria affects
approximately one in every 4 million to 8 million infants; there are only about
200 children living with it worldwide. The genetic mutation tied to it causes
those with the disease to produce the protein progerin, which blocks normal
cell function. As they age rapidly, these children suffer from a loss of body
fat and hair and an inability to gain weight. They are prone to developing
osteoporosis, a disease where bones become weak and are more likely to break.
Sam Bern was a survivor and he lived life to the fullest without regrets, and
his story and his strength really is such an inspiration. He is stronger than
we are and probably ever will be. It brings tears to my eyes knowing that
someone so special has passed, but it brings joy to my heart knowing that he
will never be forgotten, and he left his mark on this world.
Here is the link to my
article:
genetic mutations are so fascinating to me, but my question to expand on that is: if you were able to tell the genetic diseases in fetuses, would you want to find out? Or would our society start to eliminate children with birth defects? It's sad, but i know plenty of parents who dont want to father/mother a child who has a mental/ physical issue. :( RIP Sam, the fact that he lived to 17 is amazing.
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