Life According to Sam subject Sam Berns, 17, died on Friday in Boston, Massachusetts, reports The New York Times.

Sam’s death came as a result of complications of the rare disease progeria, which he had lived with his entire life. Only affecting approximately 1 in every 8 million people, the genetic disorder has degenerative symptoms that resemble extremely accelerated aging at a very young age, including brittle bones, thin skin, and stunted growth. Patients’ average life expectancy is 13, typically dying of cardiac complications.

Sam’s parents, both physicians, established the Progeria Research Foundation in 1999 that managed to isolate the gene that causes progeria in 2003, though there is still no cure.

The documentary, directed by Sean Fine and Andrea Nix Fine, played at several festivals last year including the San Francisco Jewish Film Festival, where we saw it, and aired on HBO in October. It’s recently been shortlisted for an Academy Award.

As is seen in the film, Sam was a charming, intelligent, perceptive teenager who viewed life optimistically through his round spectacles. He was beloved by his friends, excelled in school, played in the marching band, and had plans to go to college to study genetics. In perhaps the most beautiful moment in the film, he expresses that he finds solace in the thought that, after he’s gone, his mom will be able to rest and not devote her entire life to finding a cure.

“No matter what I choose to become, I believe that I can change the world,” he said in his TEDx talk last year. “And as I’m striving to change the world, I will be happy.”

In the mid ‘90s, doctors Leslie Gordon and Scott Berns fell in love and had a child. His name is Sam. He’s 16, loves fiddling with Legos, excels in school, and plays a killer snare drum.

He also has Progeria, a fatal disease that afflicts only 200-250 children in the world. It’s a rapid-aging disease, resulting in stunted growth, elderly looking skin, brittle bones, and other symptoms associated with advanced age. Inevitably, children with Progeria die from a heart attack or stroke in their early teens. To date, no treatment or cure has been found.

When Leslie and Scott discovered Sam had the disease (around the age of 2), they dropped everything and dedicated their lives to finding a cure for Progeria and buying Sam as much time as they can. They launched a campaign to help not only Sam, but other kids afflicted with Progeria. Leslie’s most crucial project is a drug trial involving several Progeria patients, with hopes that the findings will be published in a medical journal. The painfully long fight to get the research published takes a toll on Leslie, though she keeps her spirits high in the face of defeat, just like Sam and the other kids.

Life According to Sam isn’t just about Progeria. It’s about a family whose love and support for one another is so strong that even something as disheartening as Progeria can’t stop them from having fun. Sam goes to concerts with his dad, plays baseball, and plays with friends. Sam tries out for his school marching band (a dream of his), but the band director suggests that it’s a health risk for Sam to join since he’s too fragile to carry the same drum harness as the other kids. Undeterred, Leslie finds a lightweight model for Sam to wear, and he promptly gets to steppin’ with a big smile on his face. Like Sam says in the film, Progeria is just one part of his life, and he doesn’t let it stop him from having fun, being a kid, and chasing his dreams with conviction.

Sam resembles a man in his 70’s, and from what I gathered about his character in the film, he’s got an old soul to match. He exhibits the decency and compassion of someone five times his age. Sam’s a wonderful documentary subject: he’s charismatic, insightful, has a sunny attitude, and doesn’t seem to be shaken by, well, anything. He handles the notion of death—a close reality for him—with startling maturity; he finds solace in the thought that after he’s gone, his mom will be able to let go of her arduous search for the cure and rest.

Directors Sean Fine and Andrea Nix Fine (War/Dance) have crafted an inspirational, triumphant, and uplifting tale that educates as it stirs your emotions. Sam and his family are beautiful, beautiful people, and their unflinching optimism is awe-inspiring.

Look for Life According to Sam to hit HBO this fall. For more information on Progeria, visit progeriaresearch.org