translator: bob prottasreviewer: 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 drumin the foxboro high school marching band, and it was a dreamthat 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 carrya regular sized snare drum, and because of this the band directorassigned me to play pit percussion during the halftime show. now pit percussion was fun. it involved some really coolauxiliary 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 drumwith the marching band in the halftime show. so my family and i workedwith 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 apparatusthat weighs only about 6 pounds. (applause) i just want to give you some moreinformation about progeria. it affects only about350 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 successfulprogeria treatment study, and because of thisi was interviewed on npr, and john hamilton asked methe 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. so even thoughthere are many obstacles in my life, with a lot of thembeing created by progeria,
i don't want people to feel bad for me. i don't think aboutthese obstacles all the time, and i'm able to overcomemost of them anyway. so i’m here today, to share with youmy philosophy for a happy life. so, for me,there are 3 aspects to this philosophy. so this is a quotefrom 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 challengesof progeria do you face?" and i’d like to say that,even though i have progeria, most of my timeis spent thinking about things that have nothing to dowith progeria at all. now this doesn’t mean that i ignorethe 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 thingsthat 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 finda different way to do something by making adjustments, and i want to put those thingsin the "can do" category.
kind of like you sawwith 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 ♫ thank you. all right, all right, so --
that was pretty cool, and so i was ableto accomplish my dream of playing snare drumwith the marching band, as i believe i can dofor all of my dreams. so hopefully, you can accomplishyour dreams as well, with this outlook. the next aspect to my philosophy is that i surround myselfwith people i want to be with, people of high quality. i’m extremely luckyto have an amazing family,
who have always supported methroughout 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 otherfor 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 mentoryounger band members, as a single collective unit. what i love aboutbeing in a group like the band, is that the musicthat 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 goodabout 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 peoplethat surround me every day. they provide the realpositive influences in my life, as i hope i can providea positive influence in theirs as well. so the bottom line here, is that i hope you appreciateand 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 realaspect 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 manyou may know, named walt disney, and it’s one of my favorite quotes. i always try to have somethingto look forward to. something to strive forto make my life richer. it doesn’t have to be big.
it could be anything from looking forward tothe next comic book to come out, or going on a large family vacation, or hanging out with my friends, to going to the nexthigh school football game. however, all of these thingskeep me focused, and know that there’sa bright future ahead, and may get me throughsome difficult times that i may be having. now this mentality includes stayingin a forward thinking state of mind.
i try hard not to waste energyfeeling 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 ignorewhen 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 worldinto 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 derivedfrom my family and my mentors, who always make me feel whole,and good about myself. now today my ambitionshave 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 whati 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 mecalled “life according to samâ€. that was a pretty great experience,but it was also four years ago. and like anyone, my viewson 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.
i know more about it genetically. so it’s less of an embodiment now. it used to be like this thing that prevents mefrom doing all this stuff, that causes other kids to die, that causes everybody to be stressed, and nowit’s a protein that is abnormal, that weakens the structure of cells. so,
and it takes a burdenoff of me because now i don’t have to think about progeria as an entity. okay, pretty good, huh? so, as you can see i’ve beenthinking this way for many years. but i’d never really had to applyall 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 knowingthat i was going to get better, and looking forward to a timethat 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 braveisn’t supposed to be easy. and for me, i feel it’s the key wayto keep moving forward. so, all in all, i don’t waste energyfeeling bad for myself. i surround myself with peoplethat 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 danceis tomorrow night, and i will be there. thank you very much.
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