Don’t Pity Me, Says A Teen With The Aging Disease

Meet Sam Berns, the subject of the powerful new documentary Life According to Sam. Sam is into the Dave Matthews Band, like his dad. He’s a master Lego builder. He enjoys sleepovers with friends. He also happens to have Progeria, an extremely rare disease. The name is of Greek origin, and means “prematurely old.” It’s caused by a mutation in a gene; signs include loss of body fat and hair, aged-looking skin and stiffness of joints. An estimated 200 to 250 kids in the world have it, just 1 in 4 million.

Sam’s parents, both doctors, got the diagnosis when Sam was 2. They refused to accept that their son would die by 13, the average life span for a child with Progeria (typically, they have strokes or heart attacks). So they started the Progeria Research Foundation and set out to test the first experimental drug for the disease, enrolling 28 children from 16 countries in the first trial. As the mom of a child with special needs, I related to Sam’s parents’ determination to do whatever is within their powers for their son—although these parents, it must be said, have superpowers. I was charmed by Sam, a really bright, charismatic kid who turns 17 this Wednesday.

The film premieres tonight, Monday, October 21, at 9 pm EDT/8 pm CT on HBO and across the HBO platform of channels throughout the month. Starting October 21, it will be on OnDemand and HBOGo.

I reached out to Sam to ask a few questions, and he had some awesome answers.

Sometimes, people don’t understand that you can have Progeria or another disease or condition—but it doesn’t have you. Would you please explain why Progeria isn’t, as you said in the film, a “major” part of your life?

Progeria is something that I’ve had throughout my entire life, so it’s not something new….it’s always been there. What I do is I surround myself with the people and the things that I love and I just live my life. And when there is an obstacle or challenge as a result of Progeria, I focus on taking on that challenge and moving past it.

You also said in the film that you do not want people to feel bad for you. This is something that can be hard for people to understand, as I know from raising my son, Max. Would you elaborate on why people shouldn’t feel bad for you, or other teens like you? 

Well, I think that people should not feel badly for me because I don’t waste time feeling badly for myself. I actually live my life and focus on the things and people that I love. In the occasional serious situations that may be created by Progeria, I focus on moving past them. Bottom line, I don’t waste time feeling badly for myself. I live my life.

Kids who have special needs may get bullied by other kids at school. You seem to have an awesome group of friends. Based on your own experiences, what is your advice to kids with special needs so they don’t get bullied?

I can’t say what other kids situations are like exactly who have special needs of their own. I feel very fortunate that I live in a town of people who support each other. It has helped that I have grown up with many of my friends, knowing them from a very early age (even preschool). They have gotten to know me as a person—on the inside—so they think of me as Sam, me. And they think of Progeria as one of many of the characteristics that makes me who I am, as I do for anyone else who may be different, in any regard.  If anyone bullies another person because they are different, that person is not a person of high quality, and he or she doesn’t deserve your time.

Sometimes, when people meet Max, they act awkward and don’t know what to say. If you have ever experienced this, how have you dealt with it?

I have experienced this on occasion and it is to be expected. I just try to be an open book, show people who I am on the inside, so they get to know my personality first. So, my genetic disease is then somewhat of an afterthought, not something that supersedes my personality. I try to make my personality my defining quality.

You said in the film you’d like to be a geneticist. What exactly would you like to study, as a geneticist?

Well, I do want to work in genetics but I’m also interested in cell biology and biochemistry. I would like to try to advance research in many fields of disease. I just want to help people, whether through genetic disease or other diseases. I’d like to solve the problems that people have been trying to solve for a very long time—that greatly affect the people who have them.

Have you ever thought there is a reason that you were born to your parents—as it was meant to be that they would be doctors, and ultra-determined ones at that?

I haven’t really thought along those lines. I think no matter which parents have a child with Progeria, that they will do anything they can to find a cure. And my parents are doing everything they can with the skills that they have. Any parent could do what my parents are doing—whatever the child’s condition is—because they love their child.

You can make a donation to the Progeria Research Foundation here (through October 23, your gift will be matched dollar for dollar thanks to the Matching Gift Challenge from a generous donor).

Photo: Sean Fine/Courtesy of HBO

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