Jordan Sock, Staff Editor
Sam Berns died last week after complications from Progeria, the rare disease mainly attributed to its accelerated aging symptom. The genetic mutation involved with Progeria, produces the protein progerin which restricts normal cell function.
Progeria currently has no direct cure, affecting around 200 children worldwide. Patients have an estimated life expectancy of 13 years; children do not experience the accelerated aging symptom until around 18-24 months. Progeria typically is responsible for many heart problems, stroke implications, high blood pressure, etc.
Berns has been previously recognized for the documentary he composed entitled, “The Life of Sam Berns.” The story documents Berns’s progression with Progeria, and his family’s effort in creating a fund to ultimately find a cure for the disease.
Prior to his passing, Berns spoke at a TEDx event in October, fulfilling his anticipation to inspire people throughout the world. TED is a program of local self-organized speakers who bring individuals together to share their TED life experiences.
During Berns’s speech he presented to the public his philosophy on how to live a happy life. Touching on some of the obstacles he overcame in being a 50 pound high school senior, and how he still managed to conquer his dreams.
Berns first aspect in his philosophy is to be okay with what you ultimately cannot do, because there is so much you still can. Throughout his life Berns encouraged us to make the most of life taking nothing for granted.
“Now people sometimes ask me questions, isn’t it hard living with Progeria or what daily challenges of Progeria do you face? And I’d like to say that even though I have Progeria, most of my time is spent thinking about things that have nothing to do with Progeria at all,” Berns said.
One of the Berns’s greatest accomplishments was being able to play snare drum in the Foxborough high school marching band. The typical snare drum weighs about 40 pounds, 80% of Sam’s bodyweight, which only left Sam the opportunity to play pit percussion. Berns fulfilled his dream, as he and his family built a 6 pound snare drum, enabling him to play with the band.
It meant so much to Berns to be able to finally play what he truly loved, especially alongside his other friends who make up the marching band. The importance of Berns’s friends and family was a significant factor to build the person he became. Berns’s second part to his philosophy is, to surround yourself with people who you want to be around.
“Making a documentary and being on TV a couple times, I feel like I am at my highest point when I am with people that surround me every day. They provide the real positive influences in my life, as I hope I can provide a positive influence in theirs,” Berns said.
His final theory in living a happy life is to keep moving forward. Explaining that he always had something he was striving to obtain, whether it was something important or not, always gave Berns the insurance of knowing that there is a bright future ahead.
Berns’s parents, Dr. Leslie Gordon and Scott Berns, both physicians, founded the Progeria Research Foundation in hopes of finding a cure for their son. They have made a tremendous impact on a cure for this rare disease. They conducted a two and half year study including 28 children who are diagnosed with Progeria. In their findings, each patient experienced significant improvement in the studies, including weight gain ability and bone structure.
Berns’s triumph inspires anyone who does not feel content in their life to keep moving forward, in spite of challenges.
Photo credit to www.inspirationalvideoclips.org.
