The Honorary Captain

With the Super Bowl taking place in our back yards in just a few weeks, our NY office is full of chatter speculating which two teams will make it to the big show.  One of our co-workers is from Connecticut and is a dedicated New England Patriots fan that has been cheering on her favorite team all season long.  Before Tom Brady and company defeated the Indianapolis Colts this past Sunday, a moment of silence was held for one of their biggest fans, 17-year old Sam Berns.  Sam, who was the subject of the recent HBO documentary Life According to Sam, passed away from complications from progeria on January 10th.  Progeria is a rare and fatal genetic condition which causes rapid aging in children.   According to the Progeria Research Foundation, which was launched by Sam’s parents Dr. Leslie Gordon and Dr. Scott Berns and is the only non-profit organization in the world dedicated to progeria research, this condition affects just 1 in 4-8 million newborns.  That’s only about 200-250 children in the entire world.  Children with progeria face many health problems as the grow older including osteoporosis, heart disease and even strokes.  Sam passed away just one day before The Patriots were to name him the team’s honorary captain.  In his honor, they dedicated their big win on Sunday to him.

I watched Life According to Sam a few months ago and was not only inspired by Sam’s strength and determination to live life to the fullest but also touched by the tireless and steadfast efforts of his parents to do everything they could to not only help their son but other children from all over the world affected by progeria.  While the documentary depicted some very difficult and trying moments in the lives of Sam and his family, it also showed some very happy moments too. One of the moments that sticks out in my mind is when Sam and his father attend a concert for his favorite musical group, The Dave Matthews Band.  Sam’s face lights up when he has the chance to talk with members of the band and they even dedicate a song to him during their performance.  Sam and his father enjoy every single second as they sing and dance along.  Because the average life expectancy for children with progeria is just thirteen years, they both know that moments like these may be few, making the memories created even more special.

Life is so precious and anything could happen to any one of us in an instant.  For children like Sam affected by progeria and other serious, life threatening conditions, any opportunity they have to just be a regular kid can make the world of difference. Sam seemed to treasure not just the extraordinary moments in his life, but also the regular, every day ones he spent with his family and friends.

As we approach this Sunday’s highly anticipated game between the New England Patriots and the Denver Broncos, thousands of people around the country will  tune in to see which team makes it to Super Bowl XLVIII.  And while I normally don’t feel compelled to chose a side in these sorts of things, a part of me is hoping The Pats squeeze out a victory.  It would be another wonderful way to honor the life of a very brave young man.

To learn more about progeria and the work of the Progeria Research Foundation, please visit

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