Sam Berns – Wiki, Pictures (A life of Inspiration)

March 29, 2014 | 0

The life of Sam Berns is an inspiring tale of ‘can do’ against all odds.  The Progeria afflicted child died at the age of 17, on January 10, 2014, an unusually longer life than the average life expectancy of this rare disorder, which is 13 years.  Though he was diagnosed with the condition when he was just 22 months, he did a lot of things in his short-span which included building Lego towns, playing in high school marching band, earning middle-school awards, going to the prom and even working hard in the hopes of being an inventor. He even featured in the inspiring documentary ‘Life According to Sam’ and made an appearance on Ted Talks.

Sam Berns was born as Sampson Gordon Berns on October 23, 1996 in Providence, Rhode Island. His parents, Scott Berns and Leslie Gordon were both pediatricians, and when they received news about their son suffering from a rare condition, in roughly about a year, they began the Progeria Research Foundation. This was an effort aimed at increasing awareness of this condition, and promoting research on the cause and possible treatments for the disease.

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But despite the odds, Sam grew strong and determined to live with this condition. After establishing the Progeria Research Foundation, Dr. Leslie Gordon and Dr. Scott Berns embarked on a mission to discover what issues were behind this condition. In their research work, they worked on spreading awareness about the condition, the methods of treatment available and experimented with treatment methodologies that could help the progeria-afflicted children and parents to cope with the condition in a better manner.

Sam’s parents worked towards funding for a cell and tissue bank which could aid in their in-depth research. And, their effort began bearing fruits after they made a number of historic advances. First, they discovered the Progeria gene, which contributes to this condition. Second, they also discovered excess of certain protein that is found in children with the condition.

In the course of their research, Sam’s parents also made a big development in creating a drug which slows down the progression of the illness. Managing home life with relentless pursuit to explore treatment options as a part of the Progeria Research Foundation,  Sam’s parents along with other doctors worked on the clinical trials of a drug called ‘lonafarnib’ which seemed to reduce some of the effects of progeria. But though initial results did seem forthcoming, the drug was not a cure.

The parents knew that time was of essence in their research considering that the prognosis for the children who suffer from this disease is not good- they will on average live to the age of 13 years. Getting ready for school activities, was quite different for Sam Berns owing to his condition. Sam and his family had to take extra consideration in order to make things work for Sam, and for his mother, it was a challenge; that she did with remarkable zeal.  His father was a backbone of support, being a source of guidance to Sam, while working steadily on his research work. Every minute was special. no matter how ordinary it seemed.

Progeria is a fatal condition associated with change in genetic structure, and it causes accelerated aging among children. It is a very rare condition which affects approximately about one in every 4 million to 8 million babies. According to Progeria Research Foundation, there are only estimated 250 children living with the condition in the entire world. As one way of leading the fight against this illness, Sam and his family featured in the famous and heart-rendering HBO documentary called “Life according to Sam”

In this documentary, it showed how Sam, already living with Progeria, had exceeded beyond expectations. The film also featured the chronicles of the incredible work that Sam’s parents did to find a cure for their son’s condition. People got to hear what Sam had to say about himself and the condition. It was really an emotive moment for everyone. Sam said that he hoped people, through the documentary would learn how to face such a problem head on, and that he wanted people to feel positive after they watched it.

Sam Berns in his Ted Talks

In Ted Talks, the eloquent Sam talked about his philosophy for a ‘happy life’.  These were his tips –

  1.  Be ok with what you cannot do, because there is so much you can do.
  2.  Surround yourself with people, you want to be around.
  3. Keep moving forward. Be excited about something in the future, even though it may be as trivial as the release of the next edition of your favorite comic book.
  4. Never miss a party,  if you can help it.

In the same show, the 17 year old bespectacled, little boy with zestless energy, talked of his desire to play the snare drum with the Foxborough High School  marching band. However, the drum and the harness weighed 40 pounds, just ten pounds less than his own weight.  So, his parents took the help of an engineer to develop an instrument that weighed just six pounds and Sam went on to realize his dream.

Sam Berns died from complications of Progeria,  in Foxborough, Massachusetts,  a day before he was to be felicitated as the Partiots’ honorary captain. He was planning to apply to college, where he wished to study cell biology or genetics.

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Sam Berns photos

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