Transcriber: Bob Prottas
Reviewer: Ariana Bleau Lugo Hello everyone. I'm Sam, and I just turned 17. A few years ago,
before my freshman year in High School, I wanted to play snare drum
in the Foxboro High School Marching Band, and it was a dream
that I just had to accomplish. But each snare drum and harness weighed about 40 pounds each, and I have a disease called Progeria. So just to give you an idea,
I weigh only about 50 pounds. So, logistically, I really couldn't carry
a regular sized snare drum, and because of this the band director
assigned me to play pit percussion during the halftime show.
Now pit percussion was fun. It involved some really cool
auxiliary percussion instruments, like the bongos, timpani, and timbales, and cowbell. So it was fun, but it involved no marching,
and I was just so devastated. However, nothing was going
to stop me from playing snare drum
with the marching band in the halftime show. So my family and I worked
with an engineer to design a snare drum harness that would be lighter,
and easier for me to carry. So after continuous work, we made a snare drum apparatus
that weighs only about 6 pounds. (Applause) I just want to give you some more
information about Progeria. It affects only about
350 kids today, worldwide. So it's pretty rare, and the effects of Progeria include: tight skin, lack of weight gain,
stunted growth, and heart disease. Last year my Mom
and her team of scientists published the first successful
Progeria Treatment Study, and because of this
I was interviewed on NPR, and John Hamilton asked me
the question: "What is the most important thing that people should know about you?" And my answer was simply that I have a very happy life.
(Applause) So even though
there are many obstacles in my life, with a lot of them
being created by Progeria, I don't want people to feel bad for me. I don't think about
these obstacles all the time, and I'm able to overcome
most of them anyway. So I’m here today, to share with you
my philosophy for a happy life. So, for me,
there are 3 aspects to this philosophy. So this is a quote
from the famous Ferris Bueller. The first aspect to my philosophy is that I’m okay with what I ultimately can’t do because there is so much I can do. Now people sometimes
ask me questions like, "Isn’t it hard living with Progeria?" or "What daily challenges
of Progeria do you face?" And I’d like to say that,
even though I have Progeria, most of my time
is spent thinking about things that have nothing to do
with Progeria at all.
Now this doesn’t mean that I ignore
the negative aspects of these obstacles. When I can’t do something like run a long distance,
or go on an intense roller coaster, I know what I’m missing out on. But instead,
I choose to focus on the activities that I can do through things
that I’m passionate about, like scouting, or music, or comic books, or any of my favorite Boston sports teams.
Yeah, so —
(Laughter) However, sometimes I need to find
a different way to do something by making adjustments, and I want to put those things
in the "can do" category. Kind of like you saw
with the drum earlier. So here’s a clip with me playing Spider-Man with the Foxboro High School
Marching Band at halftime a couple of years ago. (Video) ♫ Spider-Man theme song ♫ (Applause) Thank you. All right, all right, so — That was pretty cool, and so I was able
to accomplish my dream of playing snare drum
with the marching band, as I believe I can do
for all of my dreams. So hopefully, you can accomplish
your dreams as well, with this outlook. The next aspect to my philosophy is that I surround myself
with people I want to be with, people of high quality. I’m extremely lucky
to have an amazing family, who have always supported me
throughout my entire life.
And I’m also really fortunate to have a really close group of friends
at school. Now we’re kind of goofy,
a lot of us are band geeks, but we really enjoy
each other’s company, and we help each other out
when we need to. We see each other
for who we are on the inside. So this is us goofing off a little bit. So we’re juniors in High School now, and we can now mentor
younger band members, as a single collective unit. What I love about
being in a group like the band, is that the music
that we make together, is true, is genuine,
and it supersedes Progeria.
So I don’t have to worry about that when I’m feeling so good
about making music. But even having made
a documentary, going on TV a couple of times, I feel like I’m at my highest point when I’m with the people
that surround me every day. They provide the real
positive influences in my life, as I hope I can provide
a positive influence in theirs as well. (Applause) Thank you. So the bottom line here, is that I hope you appreciate
and love your family, love your friends,
for you guys, love you Bro’s and acknowledge your mentors, and your community, because they are a very real
aspect of everyday life, they can make a truly significant,
positive impact. The third aspect to the philosophy is, Keep moving forward. Here’s a quote by a man
you may know, named Walt Disney, and it’s one of my favorite quotes. I always try to have something
to look forward to. Something to strive for
to make my life richer.
It doesn’t have to be big. It could be anything from looking forward to
the next comic book to come out, or going on a large family vacation, or hanging out with my friends, to going to the next
High School football game. However, all of these things
keep me focused, and know that there’s
a bright future ahead, and may get me through
some difficult times that I may be having. Now this mentality includes staying
in a forward thinking state of mind. I try hard not to waste energy
feeling badly for myself, because when I do,
I get stuck in a paradox, where there’s no room for
any happiness or any other emotion. Now, it’s not that I ignore
when I’m feeling badly, I kind of accept it, I let it in,
so that I can acknowledge it, and do what I need to do
to move past it. When I was younger,
I wanted to be an engineer.
I wanted to be an inventor, who would catapult the world
into a better future. Maybe this came
from my love of Legos, and the freedom of expression
that I felt when I was building with them. And this was also derived
from my family and my mentors, who always make me feel whole,
and good about myself. Now today my ambitions
have changed a little bit, I’d like to go into the field of Biology, maybe cell biology, or genetics, or biochemistry, or really anything. This is a friend of mine,
who I look up to, Francis Collins, the director of the NIH, and this is us at TEDMED last year,
chatting away. I feel that 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. About four years ago, HBO began to film a documentary about my family and me
called “Life According to Sam”. That was a pretty great experience,
but it was also four years ago.
And like anyone, my views
on many things have changed, and hopefully matured,
like my potential career choice. However, some things have stayed
the same throughout that time. Like my mentality,
and philosophy towards life. So I would like to show you a clip of my younger self from the film, that I feel embodies that philosophy. (Video) I know more about it genetically.
So it’s less of an embodiment now. It used to be like this thing that prevents me
from doing all this stuff, that causes other kids to die, that causes everybody
to be stressed, and now
it’s a protein that is abnormal, that weakens the structure of cells. So, and it takes a burden
off of me because now I don’t have to think about Progeria as an entity. Okay, pretty good, huh? (Applause) Thank you.
So, as you can see I’ve been
thinking this way for many years. But I’d never really had to apply
all of these aspects of my philosophy to the test at one time,
until last January. I was pretty sick, I had a chest cold,
and I was in the hospital for a few days, and I was secluded from
all of the aspects of my life that I felt made me, me, that kind of gave me my identity. But knowing
that I was going to get better, and looking forward to a time
that I would feel good again, helped me to keep moving forward. And sometimes I had to be brave, and it wasn’t always easy. Sometimes I faltered, I had bad days, but I realized that being brave
isn’t supposed to be easy. And for me, I feel it’s the key way
to keep moving forward.
So, all in all, I don’t waste energy
feeling bad for myself. I surround myself with people
that I want to be with, and I keep moving forward. So with this philosophy,
I hope that all of you, regardless of your obstacles, can have a very happy life as well. Oh, wait, hang on a second, one more piece of advice –- (Laughter) Never miss a party if you can help it. My school’s homecoming dance
is tomorrow night, and I will be there. Thank you very much. (Applause).