Among the fine documentaries on the short list for Oscars is HBO's Life According to Sam. Not your usual leading man, its star Sam Berns was an odd-looking teen, bald and pin-headed because of a genetic disease, Progeria, so rare few have heard of it. Last summer Life According to Sam made the rounds of the film festivals, garnering praise for the filmmakers Sean Fine and Andrea Nix, the husband-and-wife team that made the Oscar-winning short Inocente, about a talented artist who was also a homeless teen. At the Nantucket Film Festival in late June, I had the opportunity to meet the filmmakers, Sam, and his remarkable parents, doctors Leslie Gordon and Scott Berns. You could call them Sam's secret weapon, committed to curing this disease, not only for their son, but for the children worldwide who endure it, dying by the time they reach 13. Creating a foundation, they researched, finding ways to impede Progeria's quick progression.
At 16, Sam had defied the odds: Sam wanted everyone to know that the disease did not define him. Working hard, he excelled in school, and while he was not your typical candidate for the marching band, he worked hard to play the drums until he succeeded. Wise and charismatic, he had a talent for telling his story and might have become, though this was not his primary focus, an inspirational speaker, or president. Seeing him, knowing his plans for the future, his determination to live a full life, his optimism made you believe he would fulfill his dreams. Sam died over the weekend at age 17, leaving all in his constellation devastated. His gift was to project his spirit so fully that all that was immediately different about him fell away very quickly, and what was left was Sam's love of life. He will be missed.
A version of this post also appears on Gossip Central.