Sam Berns American teenager affected by progeria Date of Birth: 23.10.1996 Country: USA

Sam Burns: A Life Cut Short by Progeria

Samuel Gordon "Sam" Burns was born on October 23, 1996, in Providence, Rhode Island. As an American teenager who tragically suffered from progeria, a rare genetic disorder that causes premature aging and its associated health issues, Sam dedicated his life to raising awareness about the condition. He featured in the documentary film "Life According to Sam," which premiered in January 2013, shedding light on the lives of those affected by progeria.

Despite the challenges he faced, Sam maintained his dignity and courage throughout his short life. Most children with progeria do not live past the age of 13, but Sam defied the odds by living for 17 years. His TEDx talk, titled "My Philosophy for a Happy Life," continues to inspire new audiences even after his passing.

Sam's parents, Scott Burns and Leslie Gordon, both pediatricians, discovered his condition when he was less than two years old. At the time, there was limited information available about progeria in medical literature. In response, they founded the Progeria Research Foundation in 1999. Through the dedicated work of the foundation's staff, clinical trials were conducted, leading to the discovery of the drug lonafarnib, which alleviated some symptoms of progeria. Lonafarnib was initially developed for the treatment of head and neck cancer but showed promise in mitigating the effects of the rare genetic disorder.

The Progeria Research Foundation continues its efforts to find effective treatments for progeria and provides resources to support affected individuals and their families. The Oscar-nominated directors of the documentary film, Andrea Nix Fine and Sean Fine, premiered their work at the Sundance Film Festival in January 2013. The film, along with a poignant article in The New York Times Magazine, brought global recognition to Sam and his difficult journey.

Sam's love for life and pursuit of knowledge remained undiminished despite his deteriorating physical condition. He had a passion for mathematics and the natural sciences, enjoyed reading comics, playing the drums, and participating in sports competitions alongside Boston scouts.

In a memorable moment, on November 9, 2013, the Boston Bruins hockey club allowed Sam to drop the ceremonial first puck in a game against the Toronto Maple Leafs. This event was made possible through Sam's friendship with Zdeno Chára, the captain of the Boston Bruins, which began in 2006 when a 10-year-old Sam attended a game. Chára scored a goal during that game, and Sam exclaimed, "You're my hero!" to which Chára responded, "No, no, you're my hero. You're our hero."

Despite his distinctive appearance, with baldness and unusual facial features, Sam embraced life fully. His powerful TEDx talk about his philosophy for happiness resonated with many, and Sam's dream of playing the drums in a school marching band in Foxborough, Massachusetts, became a reality when a craftsman created a lightweight drum weighing only 3 kg for him.

Shortly before his death, Sam made the decision to attend college and study genetics and cell biology to assist his parents in unraveling the mysteries of genetic anomalies. He believed in his ability to make a difference and expressed his happiness during his TEDx talk.

On January 14, 2014, the Boston Bruins honored Sam with a moment of silence and a memorial video before the puck drop. Additionally, the New England Patriots football club had planned to make Sam an honorary captain during a playoff game in January 2014 against the Indianapolis Colts. However, Robert Kraft, the chairman and CEO of the New England Patriots, announced Sam's passing, bringing an end to his extraordinary journey.