Sampson
Gordon "Sam" Berns was an American who suffered from progeria and
helped raise awareness about the disease.
Born: October 23, 1996, Providence, Rhode Island, United States
Died: January 10, 2014, Foxborough, Massachusetts, United States
A student at Foxborough High School -- in
his and the Patriots' hometown -- he joined the marching band, playing a
specially designed snare drum. 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.
"Even though I have many obstacles in my life, I don't want people to feel bad for me," Berns said in that TedX talk.
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.
"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."
That attitude influenced
many, regular folks and celebrities. Those tweeting their condolences
included Katie Couric, ESPN columnist Rick Reilly and many Boston-area
athletes.
"The warrior, Sam Berns passed away today," tweeted the Boston Bruins' Brad Marchand. "He was an inspiration to everyone. You will be missed greatly.
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