‘Life is Beautiful’ ‘Nature is Kind’. These are universally repeated affirmatives. But sometimes we come across a few instances where nature has been so unkind as to make life terrible for those who undergo the experience. However, there also exist rare cases of individuals whom even the worst misfortunes in life cannot suppress their joie de vivre. One such individual was Sam Berns. He was a kid who grew old in his teens and knew that he would die soon.
Sam Berns suffered from a rare genetic condition called progeria or Hutchinson-Gilford Progeria Syndrome (HGPS) which makes the patients undergo premature ageing rapidly and they eventually die from a heart attack or stroke in their early teenage.
WHO WAS SAM BERNS?
Sam Berns, full name – Sampson Gordon Berns was born on 23rd October 1996 in Rhode Island, United States to Scott Berns and Leslie Gordon, both of them paediatricians. The diagnosis of Sam’s condition became known before he reached two years of age. Following the diagnosis of their son’s illness, Scott Berns and Leslie Gordon set up the Progeria Research Foundation to find out the underlying causes of progeria and its possible treatments. According to the Progeria Research Foundation, there are approximately 400 children worldwide who suffer from this disease. At the time when Sam was diagnosed with this rare condition, there were no medications available for its treatment.
WHAT IS PROGERIA?
Children born with progeria look normal as infants. The symptoms begin to show gradually before they attain the age of two years. Their physical growth slows down. This makes them of shorter height and lesser body weight than other normal children. They have a smaller face with an underdeveloped jaw disproportionate to the size of their head. They have a small nose, bulbous eyes, and malformed teeth. Hair, eyelashes, and eyebrows are missing. They also have skeletal deformities and cardiac complications which make progeria a fatal disease. The average lifespan of children suffering from progeria is 13 to 15 years. So we can well imagine the tribulations young Sam was going through.
JOY DE’VIVRE
However, Sam Berns did not let his share of pains and sufferings that came with progeria pin him down. He was a bright student at the Foxboro High School in Foxboro, Massachusetts, and excelled in his studies. He wanted to become an engineer and inventor. But later on, when he grew older, he wanted to study genetics and biochemistry. Maybe a part of him was curious to solve the cruel subtle puzzles of nature of which he was an accidental victim. A single missing genetic letter in the chromosome causes Progeria.
Despite his limitations, Sam was full of exuberance and lived an active life. Instead of whining about the things he could not do, he focused on the activities he could manage to do. He loved music and played percussion in his high school marching band. Sam was also associated with the Boy Scouts of America and had attained the rank of an Eagle Scout. Sam was also a sports enthusiast. He was a jolly and affable human being who cherished the company of his family and close friends. Sam was an optimist, though he knew that he would not live very long, he still had grand plans for his future. He was an activist who helped to raise awareness about progeria. He was one of the 28 children from around the world suffering from progeria who participated in a clinical research trial conducted by the Progeria Research Foundation.
WORLDWIDE RECOGNITION
Sam Berns became the worldwide public face of progeria when HBO premiered a documentary in October 2013 called “Life According to Sam”. In December 2013, Sam Berns delivered a talk in the TEDx MidAtlantic titled “My Philosophy for a Happy Life”. Nearly 45 million people have viewed it to date. Although in his teens, Sam had a mature outlook and a deeper understanding of life. In his Ted talk Sam gave his three philosophies for a happy life. Sam wished to be remembered as having a very happy life. And he wanted others to be happy too.
3 LIFE CHANGING PHILOSOPHIES OF SAM BERNS
1. The first facet to Sam’s philosophy was – to accept what we eventually cannot do because often, there is so much that we can do.
2. The second aspect of his philosophy was – to surround oneself with people of high quality whom we want to spend time with.
3. And the third and final facet of Sam’s philosophy was – to keep moving forward. Whatever be the pace, there should always be something to look forward to.
A few days after he shared his philosophy for living a happy life on the Ted Talk, Sam Berns passed away in January 2014. He was only 17 years old. But the story of his optimistic and courageous attitude towards life will continue to motivate millions on this planet.
References:-
- Hutchinson-Gilford Progeria Syndrome https://rarediseases.org/rare-diseases/hutchinson-gilford-progeria/#:~:text=Affected%20Populations&text=The%20disorder%20was%20originally%20described,children%20living%20with%20progeria%20worldwide.
- The Short, Remarkable Life of Sam Berns Turned Spotlight on Progeria By Susan Brink, for NATIONAL GEOGRAPHIC https://www.nationalgeographic.com/news/2014/1/140114-progeria-disease-berns-children-premature-aging-research-gene-mutation/
- My Philosophy for a Happy Life / Sam Berns / TedxMidAtlantic https://www.youtube.com/watch?v=36m1o-tM05g
