Sam Berns, the face of progeria, a fatal disease that accelerates the ageing process, passed away Friday.
Sam, 17, of Foxborough, Massachusetts, was diagnosed with progeria at just 22 months. His parents, Dr. Leslie Gordon and Dr. Scott Berns, announced his death.
"The entire (Progeria Research Foundation) community mourns the loss of this remarkable young man who not only inspired (Progeria Research Foundation)'s creation, but also touched millions of people worldwide," a statement issued by the Foundation that was established by Sam's parents, stated.
Following his diagnosis, Dr Gordon and Dr Berns founded the Progeria Research Foundation in 1999 to find the cause of the disease and a cure. An HBO documentary was made last year about Sam, which raised awareness about the disease and the research on it.
Sam was close to the Patriots Chairman and CEO Robert Craft who was planning to make him the honorary captain of the New England Patriots playoff game against Indianapolis Colts, Saturday. Robert Kraft said that he was looking forward to spending time with him and his family. "I loved Sam Berns and am richer for having known him,'' Kraft said in a statement, Saturday.
Progeria is an extremely rare disease that affects approximately one child in every 1 million to 2 million births. It is estimated that around 250 children suffer from the disease across the world, reportedABC News.
Children with progeria live only till age 13. Sam turned 17 last year.
In an interview with ABC last year, Sam said he hoped his mother would stop researching on progeria one day. "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."
