Sam Berns, the Massachusetts high school student who lived with a rare genetic disorder that caused him to age rapidly, died Friday from complications with the disease. He was 17.
Berns, who became something of the poster child for the rare aging disorder, called progeria, inspired the formation of the Progeria Research Foundation, a nonprofit established by Berns’ family members to treat and better understand the disease. According to the Boston Globe, Berns’s parents, both doctors, even started a research campaign that flew children with progeria to Boston from all corners of the globe. In 2003 they were able to identify the gene that causes the disorder and develop a drug treatment that has aided in prolonging the lives of children with progeria.
According to reports, doctors told Berns’s parents he wouldn’t live past the age of 13. Berns died at home on Friday with his parents by his side.
“It’s with heavy hearts we announce Sam Berns has passed away,” the Progeria Research Foundation announced Saturday on its Facebook page. “His courage moved all who knew him.”
Progeria, known by some as the “Benjamin Button” disease, is estimated to occur in just one in every 4 to 8 million births, according to the Progeria Research Foundation. The extremely rare and fatal disease strongly resembles normal human aging, but begins in young children. An estimated 250 children worldwide currently live with the disorder.
Progeria patients often have narrow, shrunken or wrinkled faces, and usually experience baldness and loss of eyebrows and eyelashes. Most progeria patients are short, have small jaws, dry, scaly skin and a limited range of motion. People with progeria can look decades older than they are because of these symptoms. Patients can also suffer from cardiovascular problems, musculoskeletal degeneration and other symptoms of aging.
“Even though there are many obstacles in my life, I don’t want people to feel bad for me,” Berns said while speaking at a TED conference in Washington, D.C. last month. “I don’t think about these obstacles all the time, and I’m able to overcome most of them anyway.” Berns’s speech was titled “My Philosophy for a Happy Life.”
Berns was diagnosed with progeria in 1998, when he was 22 months old. According to ABC News, Berns’ parents, Dr. Leslie Gordon and Dr. Scott Berns, started clinical trials for a drug usually used to treat cancer but proved effective for slowing the effects of progeria.
"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," Sam Berns told ABC News last year.
Sam Berns and the research he motivated were the subjects of a 2013 HBO documentary called “Life According to Sam.” Berns is credited with inspiring many people through his bravery in fighting the illness.
“You’re a different person after you meet Sam for the first time,” John Seng, a Progeria Research Foundation board member told the Boston Herald. “We go through every day worrying about traffic jams and why the Internet is so slow, yet, here is Sam Berns, carrying on with his life. He didn’t want people to feel sorry for him, he said he was happy and he meant it.”