Sam Berns died last week, at the age of 17.
I never knew him, but he touched my heart - and those of so many others.
I first saw his picture years ago. A teenager weighing 50 pounds and looking like a man in his 70s, facing almost certain death sooner rather than later, is not someone you easily forget. Sam had a rare disease known as progeria. He was diagnosed at 22 months. The average life expectancy for children with this disease is 13 years. Sam beat the odds, by four years, but that isn't what made him special.
When he was 13, he agreed to be followed (as it turned out, for the next three years) by Oscar-winning documentarians Sean Fine and Andrea Nix Fine. There was only one condition, which he made clear at the outset: "I didn't put myself in front of you to have you feel bad for me," he says. "You don't need to feel bad for me. Because I want you to get to know me. This is my life."
I did feel bad for him, very bad, for him and for his parents and family. But that's my problem, not his. What is remarkable is that he didn't seem to feel sorry for himself.
He lived his life with gusto. He was an Eagle Scout and a huge sports fan who loved math and science and was passionate about drumming. A high school junior, he was planning to apply to college when he died.
Sam is not the only hero of this story.
Both of his parents are pediatricians. He was their only child. It is hard to imagine just how devastating it must have been for his parents, whose work is to heal other children, to learn that their precious son suffered from a rare disease for which there is no cure.
At the time of his diagnosis, there was no foundation or institute studying this disease. If you're going to get sick, one of my friends said to me years ago, best to get something that a lot of other people (preferably including some celebrities and gazillionaires) also have. Progeria is a rare disease. There were no celebrities pumping money in to find a cure.
Sam's parents aren't celebrities, and they aren't gazillionaires, but they have medical degrees and an amazing family. In 1999, the year after Sam's diagnosis, they founded the Progeria Research Foundation, based in Peabody, Mass., north of Boston, two towns away from where I grew up. The executive director is Sam's aunt. Another aunt runs the website. The medical director is his mother.
A team that included his mother found the gene that causes progeria. Another team found the first treatment, which began clinical trial in 2007. The most recent clinical trial began in 2012. There is still no cure.
In a TEDx talk, Sam shared his wish: to march with his high school band playing the snare drum. But he couldn't, because he weighed 50 pounds and the drum and harness weighed 40 pounds. His parents, happily, had the resources to find an engineer to make a 6-pound harness. Sam got his wish.
The website includes videos from other children with this terrible disease. In hers, Ashley speaks to other children, telling them not to get upset when people stare, because they may not know what progeria is. When her chest hurts, she says, she tries to focus on other things.
Sam wanted to change the world. "No matter what I choose to become, I believe that I can change the world. And as I'm striving to change the world, I will be happy."
He did change the world. Someday, thanks in no small part to Sam and his family, there will be a cure. But even more, he will live on as an inspiration to anyone who watches the documentary or reads his words or just sees his picture. If Sam Berns could be happy, with all that he faced, then perhaps the rest of us can hold on to his spirit and find happiness in our own lives.
May he rest in peace.