Life According to Sam

Fine, Sean, Nix Fine, Andrea

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Dammeyer, Kristen

Date of entry: May-26-2022

Summary

Life According to Sam provides insight into the life of Sampson “Sam” Berns and his family. At the beginning of the film, Sam states, “I want you to know me.” Accordingly, the film alternates between highlighting Sam’s experiences as he navigates life as a teenage boy and his participation in the first ever clinical trial for progeria. At the start of the film, Sam is a 13-year-old boy in middle school. As with many other boys his age, his interests include Legos, music, and spending time with his friends, or his “bros” as he affectionately calls them.

But Sam was diagnosed with progeria just prior to his second birthday. Progeria is a rare disease that affects approximately 250 children worldwide, caused by a genetic mutation which codes for the formation of an abnormal toxic protein, protegrin, that builds up in organs over time. It is a premature aging syndrome that causes progressive cardiovascular decline and for which there is no cure. The average age of death for these children is 13, and they die primarily of heart attacks and strokes.

At the time of Sam’s birth his mother Leslie was a pediatric intern and his father, Scott, a pediatric emergency medicine physician. After his diagnosis, the family devoted themselves to progeria, an orphan disease which at the time had no identified genetic etiology, no foundation, no research, and no treatment. With the help of Leslie’s sister Audrey, the family started The Progeria Research Foundation, which raised over $1.25 million dollars, funded the discovery of the gene for progeria, and began the first clinical trials to test treatment for the disease.

In the film, Leslie spearheads the first ever clinical trial for the treatment of progeria. The drug, lonafarnib, had demonstrated efficacy in mice and was FDA approved for a clinical trial including 28 children from 16 countries. The children would receive the medication for 2.5 years and return to Boston Children’s Hospital three times per year for a battery of tests. At the end of the trial, Leslie goes through the arduous process of writing up the results and submitting the trial for publication in hopes of making the drug more widely available for children with progeria. In the end, the trial results are published and the results for individual patients are released. While the medication falls short of being a cure, there are glimpses of hope in patients whose disease progression has been slowed or even reversed.

Commentary

Part of what made the film quite interesting was the complexity of its main subjects. Take Sam, for example. At times, Sam demonstrates wisdom beyond his years. Given that so many of his peers with progeria have died, Sam discusses how death is difficult to think about, but he approaches dealing with death in a very structured way, knowing that children with progeria often cannot just “fight it out.” At other times, we are reminded that Sam is only thirteen years old. He enjoys spending time with his friends, family, and cats. He has goals such as making the high school marching band drumline. And he has dreams and aspirations for his future – going to MIT, becoming an inventor, winning a Nobel Prize, and retiring early to spend time with his family. Sam must navigate how much of his life he allows progeria to consume. He wishes his mother could have a different job, a job that she can “leave at the end of the day,” but he is also grateful for the hope her scientific work affords him. He has a profound appreciation for everything that “makes me, me,” because he is stripped of those things during his many trips to the hospital. Exemplified by his emotional middle school graduation where he receives multiple awards for his character, academic excellence, and leadership, Sam is an inspiration to many classmates and adults in his life.

His mother, Leslie, is remarkable as well. Driven by her love for Sam, she has found her passion and purpose in studying progeria. She clearly has a vested interest in the outcome, a fact which may make some in medicine uncomfortable, but it is precisely this vested interest, she argues, that enables her to serve as a better scientist. Rather than being driven by academic success, she focuses only on what is safe and what can help children with progeria. Her devotion to children and families affected by progeria is incredibly meaningful. Prior to her work, families were told that there was no research on progeria, and nothing could be done for their children. And Leslie is able to offer her patients not just medication, but emotional support. Her relationship with patients is best summarized by her patient Priya, who says, “Her personal treatment, not medicines, help me the most.”

Sam’s father, Scott, provides even more insight into the lives of families managing a rare and fatal disease. Scott describes in the beginning that the “worst thing” as a parent is being told that you have a child for which nothing can be done. This news is especially challenging for someone like Scott, who identifies solving problems as part of his job and personal identity. He also describes how progeria has taught him to live in the present more. Throughout the film, it is emotional to watch heartfelt moments when Scott cherishes the feeling of being a dad. In all, the film is an inspiring and emotional portrayal of a family who has devoted their lives to tackling progeria while simultaneously embracing life and living the present day to its fullest.