A Foxborough, Massachusetts high school student whose battle with progeria has served as an inspiration for others with the rare aging disease, died at age 17 last Friday night. The student, Sam Berns, died at home with his parents by his side, according to the Boston Globe.
Sam’s parents, Leslie Gordon and Scott Berns, have been instrumental in advancing progeria research ever since their son was diagnosed early on his in life. Both Leslie and Scott are doctors, and Gordon managed to successfully isolate the gene responsible for the disease in 2003. Gordon subsequently began administering a drug treatment to her son that allowed him to surpass his life expectancy of age 13, and many others around the world suffering from the disease also sought her treatment.
Progeria is a genetic disease that causes the body to age rapidly beginning at an early age. Other notable individuals afflicted with the disease include Leon Botha, DJ for the South African hip-hop group Die Antwoord. Botha, an artist as well as a DJ, was one of the world’s oldest survivors of progeria before he passed away at age 26.
Berns was notable for the humble and honest ways in which he discussed his disease, an approach which gained him several supporters around the world including New England Patriots owner Robert Kraft. Berns recently spoke at a TED event regarding his experiences.
“Even though there are many obstacles in my life, I don’t want people to feel bad for me. I don’t think about these obstacles all the time, and I’m able to overcome most of them anyway,” Berns said during the recent TED talk.
In an interview with ABC News, Berns also explained that he hoped that his mother would one day be able to stop researching his disease.
“I kind of just want my mom to be done with progeria for her sake, because my mom will keep working forever until progeria is cured,” he said.
Berns is the subject of the HBO documentary “Life According To Sam,” which earned a spot on the Academy Award shortlist for its depiction of Sam’s life and his parent’s research.