SAM BERNS: BIOGRAPHY AND MESSAGE HE CONVEYED - CULTURE VOCABULARY - 2025

Sam Berns (1996-2014) was an American teenager who lived a short life as a result of a rare but deadly genetic disease called Progeria. This disease is suffered by less than 300 children around the world, and those who convalesce from it do not usually pass the age of majority.

Berns spent most of his short life raising awareness of the disease globally. Progeria, as it affects very few people, is not known to most people.

Sam Berns parents. By Peabody Awards (https://www.youtube.com/watch?v=DgNrYeE_-ks), via Wikimedia Commons

The genetic nature of the disease makes it difficult to find a cure, which puts those who suffer from it in a precarious position for most of their lives.

Sam rose to world fame when the HBO television channel made a documentary titled "Life According to Sam," which tells the young man's life story. It was nominated for best documentary at the Oscars.

Biography

Sampson Gordon “Sam” Berns was born in Providence, Rhode Island, United States, on October 23, 1996. When he was newborn, neither his parents nor the doctors who brought him to life detected any type of problem.

When Sam was just two years old, a doctor diagnosed the rare genetic condition that was affecting his growth. It was then that his parents were informed that he suffered from Progeria, one of the least common diseases on the planet and therefore one of the least known.

Berns' parents were pediatricians. They devoted all their available resources to finding out why their son's condition existed. The young man, when he was diagnosed with the condition, had a life expectancy of 13 years. Usually, progeria does not allow people to pass that age.

Progeria

Progeria is an extremely rare genetic disorder, which first manifests itself in the appearance of the nucleus of human cells. A healthy cell has a circular-oval shape, while a cell affected by this genetic condition is extremely deformed.

This genetic disorder affects a very small number of people. Less than 350 people are believed to have been diagnosed with Progeria globally. The condition manifests itself in the form of a mutation, but it cannot be transmitted, since those who suffer from it do not live long enough to reproduce in almost 100% of cases.

The symptoms manifested by common patients, such as Berns, are very similar to aging humans. For this reason, Berns appeared to be much older than he really was. In fact, the word progeria comes from the Greek (pro: premature; geria: advanced age).

One of the reasons that scientists are so interested in studying this disease today is because of its relationship to aging. It is believed that an in-depth study of the causes of Progeria can give a better understanding of the causes of aging in humans.

Life as a young man

Berns disease did not allow him to have a normal life at any point in his development. However, he and his family did everything possible to make his daily life as normal as possible.

When he was 16, he wanted to play percussion in his school band. However, Progeria did not allow him to hold a drum strong enough to be able to march alongside the band. An architect and his parents worked to design a special model that would allow Sam to lift the small percussion instrument.

None of the negative events in his life allowed the young man to be unhappy. In fact, in an interview they did on the radio, the young man said that the most important thing people should know about him is that he lived a very happy life.

Progeria Research Foundation

When Sam was diagnosed with the disease, his parents searched for all the information they could gather about the disorder. However, they found very little available.

The number of people affected by the disease was so small that the necessary resources simply had not been dedicated to studying it.

As a consequence of this, her parents created the Progeria Research Foundation. Her mother also presented the first successful results against the treatment of the disease thanks to the efforts of the foundation.

The aim of the foundation is to make known to the world the existence of this deadly genetic condition. In addition, it seeks to promote research about the causes that make people suffer from Progeria in order to find possible cures or tools to treat it.

The foundation looks to the families of the convalescent to offer them the necessary resources to cope with the treatment of the disease.

Activities and honors

Sam developed a keen interest in the activities his body did allow him to do, since most physical activities were out of reach. He was very interested in comics and sports. In particular, he was fond of sports teams originating in Boston.

He became great friends with Bruins (ice hockey) captain Zdeno Chára, who admired him deeply. One of the most moving anecdotes between this duo of friends occurred when Berns yelled at Chára at a match that “he was his hero”.

Chára responded to Berns during the match, saying that rather Berns himself was his idol and that of the entire team. After his death, the Bruins team presented a ceremony in honor of the young man before one of the games of the season.

TEDx talk and documentary on HBO

Sam gave a TED talk where he talked about his philosophy of life. There he presented all his ideas that motivated him to live a full life, beyond the deadly condition with which he was born. His speech was widely applauded and has been viewed more than 30 million times globally.

His interesting story also captured the attention of the HBO producers. For that reason the channel decided to produce a documentary where Berns's life was narrated.

The name given to the piece was "Life According to Sam" and it was considered for an Oscar nomination along with 15 other short films.

Death

Sam Berns' death was sudden, caused by his illness. He died a year after filming the documentary with HBO and just one day before participating as an honorary captain in a New England Patriots game. Berns passed away at 17 years of age, on January 10, 2014.

Message you transmitted

Sam's ideals can be found both in his TED talk and in the documentary he made for HBO. Sam's life conveys three main messages, which he explains himself during his talk.

Focus on what can be done

The first of these messages is that it is not necessary to worry about what cannot be done, because there are too many things that can be done instead.

For him, Progeria did not allow him to do a lot of activities that many young people are used to doing, but he recommends focusing on the positive.

For him, achieving goals is possible beyond the difficulties that life presented. Perhaps a normal young man would have been able to lift a percussion instrument, but although it was not possible for him to do it naturally, it was possible for him to do it using special tools that his family provided.

Surround yourself with the right people

For Sam, one of the most important things in life is being around people who are worth being with. He himself refers to these people as high-quality human beings, who judge the person by who they are and not by how they look. This was Sam's second message to the world.

This idea was of particular importance to Sam, who was always affected by a different physical image from those around him. The young man always wanted the people around him to provide a positive influence on his life, as he always tried to do reciprocally.

Have hope

For Sam, it was always extremely important to visualize everything that you want with great desire. This helps to have a clear focus on the future and to forget about the problems that may be affecting people day after day.

Focusing on which comics would be out next or his favorite team's next game gave meaning to his day to day; They let him know that the future was full of things that would make him happy.

It is not a matter of ignoring negative feelings, but accepting them. Sometimes it is necessary to be brave; When a person feels bad, it is necessary to imagine a future where that feeling is no longer present, because that helps to move forward. That's the third and last message from Sam.

References

1. Life According to Sam Berns, Medpage Today, 2013. Taken from medpagetoday.com
2. Sam Berns TED Talk, Youtube, 2013. Taken from youtube.com
3. The short, exuberant life of Sam Berns, R. Marantz, 2014. Taken from nytimes.com
4. About Sam, Life According to Sam, (nd). Taken from lifeaccordingtosam.com
5. Review: The joy and perseverance of 'Life According to Sam', S. Linden, 2013. Taken from latimes.com