Sam Berns who was suffering from an extremely rare 'aging disease' has died at age 17.
Sam was born with Progeria, a genetic abnormality that causes accelerated aging. The syndrome is so rare that Sam was one of only about 200 people affected with it in the entire world.
The genetic mutation tied to Progeria causes the production of the protein progerin, which blocks normal cell function in people who are affected by the disease. The victims of Progeria age rapidly and suffer from a loss of body fat and hair. Those who suffer from Progeria develop the inability to gain weight. They are likely to develop osteoporosis, a disease where bones become weak and are more likely to break.
The Progeria Research Foundation (PRF) wrote on its website that Sam's parents confirmed that Sam died on Friday, Jan. 10, due to complications arising from Progeria.
"The entire PRF community mourns the loss of this remarkable young man who not only inspired PRF's creation, but also touched millions of people worldwide," per a statement released by PRF.
Sam, born on October 23, 1996, was first diagnosed with Progeria at just 22 months. His parents, Dr. Leslie Gordon and Dr. Scott Berns, established the Progeria Research Foundation in 1999 to find the cause, treatment and cure of the fatal genetic abnormality.
HBO Documentaries also broadcast the story of Sam in "Life According to Sam" in 2013. The documentary depicted Sam's courage and spirit, which moved everyone who came to know him personally. The documentary also drew the attention of Robert Kraft, the owner of the New England Patriots NFL football team, which plays in Sam's hometown Foxborough, Massachusetts.
Kraft also expressed interest in Sam's medical condition and had previously donated $500,000 to the foundation started by Sam's parents.
The NFL football team observed a moment of silence in Sam's honor before their playoff game against the Indianapolis Colts on Saturday, January 11.
Brad Marchand, a professional ice hockey player for the Boston Bruins, also expressed sorrow at the loss.
The warrior, Sam Berns passed away today. He was an inspiration to everyone. You will be missed greatly. Fly High.
