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)
Hammaga salom. Mening ismim Sem, men endigina 17 yoshga kirdim. Bir necha yil oldin, maktabda xali 9-sinfga o'tmasimdan avval, men Foksboro maktabi marsh ansamblida kichkina baraban chalishni xohlardim, va bu orzuyim edi, men uni amalga oshirishim kerak edi. Lekin istalgan bir osiladigan baraban tahminan 18 kg og'irlikka ega edi, men esa kasalman. Kasallik progeriya deb nomlanadi. Tasavvur qila olishingiz uchun aytaman, men 22,6 kg atrofidaman. Ya'ni, texnik sabablarga ko'ra, men oddiy kichkina baraban olib yurolmasdim, va shuning uchun, ansambl dirijyori meni oraliqlarda zarbli musiqiy asboblarda o'ynash uchun qo'ydi. Xo'sh, zarbli asboblar — bu qiziq edi... Ularning ichiga juda zo'r yordamchi zarbli asboblar kirardi: bongo, litavrlar, timbales va qo'ng'iroqchalar kabi. Xa, bu qiziq edi. Lekin bu marsh qilishga kirmasdi va bu meni tushkunlikka tushirardi. Shundayam meni marsh jamoasida kichkina barabanda oraliqlarda o'ynash niyatidan hech narsa to'xtatolmasdi. Xo'sh, mening oilam va men, muhandis bilan birga menga olib yurishga oson bo'ladigan mahkamlash konstruksiyasi ustida ishladik. Ancha vaqt ishdan keyin biz yarata oldik. Bu kichkina baraban 2,7 kg edi. (Qarsaklar) Men sizlarga progeriya haqda ozgina ta'rif bermoqchiman. Hozirgi kunda dunyoda bu kasallikka chalingan bolalar soni 350 ta. Ya'ni, bu juda kam uchraydigan kasallik. Va uning zarar yetkazuvchi omillari o'z ichiga: terining yupqalashishi, o'sishdan to'xtab qolish, juda sekin vazn olish, va yurak kasalliklarini oladi. O'tgan yili mening onam o'zining tadqiqotchilar jamoasi bilan progeriyani davolash bo'yicha ilk muvaffaqiyatli izlanishlarni taqdim etdi, shundan keyin mendan NPR'da intervyu olishdi va Jon Gamilton menga savol berdi: "Insonlar siz haqingizda bilishi kerak bo'lgan eng muhim narsa nima?" Va men oddiy qilib, baxtli hayot kechirayotganimni aytdim. (Qarsaklar) Hayotimda yetarlicha ko'p qiyinchiliklar bo'lsa-da, va ularning ko'pi progeriya sababli bo'lsa-da, odamlar menga achinishlarini xohlamayman. Men bu noqulayliklar haqida o'ylamayman, va nima bo'lganda ham ko'pchiligini amallay olaman. Bugun men sizlarga o'zimning baxtli hayot konsepsiyamni ulashish uchun bu yerdaman. Xo'sh, men 3 ta aspektga ajrataman. Quyida mashhur Ferris Byullerdan sitata. Konsepsiyamning birinchi aspekti — Men nima qila olmasligim borasida bosh qotirmayman, chunki men qila oladigan shuncha narsa bor. Ba'zida insonlar shunga o'xshash savollar berishadi: "Progeriya bilan yashash qiyinmi?", yoki "Bu bilan bog'liq qanday qiyinchiliklar bilan har kuni yuzlanasiz?" Men javob berishni xohlardim, progeriya bilan kasal bo'lsam-da, odatda u bilan bog'liq bo'lmagan narsalar haqida o'ylab ko'p vaqtimni o'tkazaman. Bu men bu kabi noqulayliklarni inkor qilaman degani emas. Men nimadir qila olmaganimda, masalan, uzoq masofaga yugurish, yoki daxshatli attraksionlarda ucha olmaganimda nimalardan mahrumligimni tushunaman. Shunday bo'lsa ham, men o'zim qila oladigan ishlarda o'zimni diqqatimni jamlayman, ular bilan ko'p shug'ullanaman, bular skautlar harakati, yoki musiqa, yoki komikslar, yoki qanday men yoqtirgan Boston sport jamoasi. Xa, shunday. (Kulgu) Xullas, ayrim narsalarni "qila olaman" kategoriyasiga o'tkazish uchun ba'zida original yechimlarni o'ylab topishimga, ba'zi narsalarga esa moslashishimga to'g'ri keladi. Baraban bilan bo'lgan voqeadagidek. Mana bu klipda men "O'rgimchak odam" dagi musiqani chalayapman, Foksboro maktabi marsh ansambli tarkibida, oraliqlardagi tanaffuslarda, ikki yil oldin. (Video) ♫ "O'rgimchak odam" filmidagi musiqa ♫ (Qarsaklar) Tashakkur. Yaxshi, xo'sh... Bu juda zo'r bo'lgan edi. Shunday qilib men marsh jamoasida kichkina barabanda o'ynash orzuyimni amalga oshira oldim, chunki men buni uddalay olishimga ishongandim. Xullas, umid qilamanki, sizlar ham o'z orzularingizga erisha olasizlar. Konsepsiyamning ikkinchi aspekti — bu o'zimni o'zim xohlagan insonlar bilan o'rashim, yuqori irodali insonlar bilan. Mening shunday ajoyib oilam bor ekanligi bu mening omadli ekanligimdir. Oilam meni doim qo'llab-quvvatlagan, butun umrim davomida. Va mening shunday yaqin o'rtoqlarimning borligi ham mening omadliligimdan dalolat beradi. Albatta biz biroz "aqldan ozgan" musiqiy fanatlarga o'xshaymiz, va biz bir-birimiz bilan muloqotdan zavq olamiz, kerakli payt bir-birimizga yordam beramiz. Biz bir-birimizni ichkaridan ko'ramiz. Biz ba'zida biroz tentakroqmiz. Hozir biz o'rta maktabning oxirgi sinfidamiz, va biz yoshroq ishtirokchilarni musiqiy guruhimizga chaqirishimiz mumkin, xuddi bir jamoadek. Musiqiy guruhda bo'lish menga nega yoqadi? biz birgalikda chaladigan musiqa — jonli, sohta emas, u progeriyani chetga surib tashlaydi. Shunday ekan, men bu haqda havotirlanmayman, musiqa bilan shug'ullanib o'zimni yaxshi his qilaman. Va hattoki, hujjatli film olib, bir-ikki marta televidenyega borganimda yoki har kuni o'z yaqinlarim orasida o'zimni hissiyotlarimning eng yuqori nuqtasida his qilaman. Ular mening hayotimga ijobiy ta'sir ko'rsatishadi va men ham xuddi shunday, ularga ijobiy ta'sir ko'rsataman deb umid qilaman. (Qarsaklar) Rahmat. Xo'sh, eng muhimi bu yerda shuki, umid qilamanki, siz o'z oilangizni qadrlaysiz va sevasiz. O'z do'stlaringizni, aka-ukalaringizni, o'rtoqlaringiz, ustozlaringizni va atrofingizdagilarni. Chunki buning barchasi kundalik hayotimiz uchun juda muhim, va buning barchasi hayotimizga yetarlicha ijobiy ta'sir ko'rsatadi. Konsepsiyamning uchinchi aspekti — Doim oldinga harakatlaning. Mana bu siz hammangiz biladigan inson Uolt Disneyning gaplari, va bu mening eng sevimli sitatam. Men doim quvonch bilan kutib yashayman. Hayotimni boyitish uchun doim olg'a intilaman, harakat qilaman. Bu katta narsa bo'lishi shart emas. Bu yoki sabrsizlik bilan kutilgan komiksning davomi chiqishi, yoki oila bilan birga uzoqqa dam olishga otlanish, yoki do'stlar davrasida vaqtichog'lik qilish, maktabda keyingi futbol o'yiniga tayyorgarlik ko'rish. Bularning barchasi asosiy narsalarda diqqatni jamlashga va oldinda yorqin kelajak kutayotganini his qilishga, va ba'zida men duch keladigan qiyin vaqtlardan o'tishga yordam beradi. Dunyoni bunday ko'ra olish uzoqni ko'zlay olish va ehtiyotkorlik talab qiladi. Men o'zimga achinib kuchimni sarflamaslikka harakat qilaman, chunki shunday bo'lganida men o'zimni boshi berk bo'chaga kirib qolgandek his qilaman va bunday paytda quvonch uchun o'zingizda kuch topa olmaysiz. Bu albatta tushkunliklarga e'tibor qilmayman degani emas, men ularni qabul qilaman, hech bo'lmaganda ularni tushunish va buni oldini olishga harakat qilish uchun. Men yoshroq bo'lganimda, injener bo'lishni xohlaganman. Men ixtirochi bo'lishni istaganman. Dunyoga yorqin kelajak olib kela oladigan. Menimcha bu mening Lego o'yinchoqlarini yoqtirganimdan bo'lsa kerak. Ularni yasayotib men o'z g'oyalarimda mustaqil ekanimni his qilardim. Va bu menimcha oilam va ustozlarim ham tufayli shunday. Ular menga doim o'zimni butun va pozitiv baholay olishimga yordam berishgan. Bugungi kunda mening intilishlarim biroz o'zgargan, men o'zimni biologiya fanida sinab ko'rmoqchiman, ehtimol aynan hujayra biologiyasi yoki genetika sohasida yoki bioximiya yoki shunga o'xshash yo'nalishda. Bu mening do'stim, va men uni juda hurmat qilaman. Frensis Kollinz, Sog'liqni Saqlash Milliy Instituti direktori, va biz bu yerda o'tgan yilgi TEDMEDda suhbat qurayapmiz. Menda shunday hissiyot borki, kim bo'lishimdan qat'iy nazar men dunyoni o'zgartira olishimga ishonaman. Va bunga harakat qilayotib men o'zimni baxtiyor his qilaman. 4 yilcha oldin, HBO "Semga ko'ra hayot" deb nomlanadigan men va oilam haqda hujjatli film suratga olishni boshladi. Bu ajoyib tajriba bo'ldi, lekin nima bo'lgandayam bu to'rt yil oldin edi. Va hammada bo'lganidek, mening qarashlarim bu vaqt ichida ancha o'zgardi. Umid qilamanki, yanada yaxshi tomonga. Lekin ba'zi narsalar baribir o'zgarmadi. Masalan mening dunyoqarashim va hayotga munosabatim. Men sizlarga men kichkinaroq bo'lgan paytimning videosini ko'rsatishni xohlardim, u yerda bu munosabatni ko'rish mumkin. (Video) Men kasallikning genezisi haqda ko'p narsa bilaman. Bu hozir aktual emas, lekin bir paytlar ko'pchilik bolalarning o'limiga sabab ekani va bu har bir insonni tushkunlikka tushirishi meni bu materialni yaratishdan to'xtatib turardi. Va hozir siz hujayralar rivojlanishini sekinlashtiruvchi defektli oqsilsimon moddani ko'rayapsiz. Shunday ekan, men endi o'zimni ancha yengil his qilaman, men progeriya haqda o'ylamasligim kerak. Yomon emas, to'g'rimi? (Qarsaklar) Rahmat. Ko'rayotganingizdek, men ko'p yillar davomida shunday o'ylaganman. Lekin men bu konsepsiyamning barcha aspektlarini bir vaqtning o'zida his qila olmasdim. O'tgan yilning yanvarigacha. Men og'ir kasallangan edim, bir necha kun shifoxonada bronxit bilan yotdim. Va bu payt meni men qiladigan, shaxs ekanligimni his qilishga yordam beradigan hayotimning barcha sferalaridan mahrum edim. Lekin sog'ayayotganimni va tez orada o'zimni yaxshi his qila boshlashimni tushunishim oldinga harakat qilishimga yordam berardi. Va ba'zida, dadilroq bo'lishimga to'g'ri kelar edi, va bu har doim ham oson kechmas edi. Ba'zida qaltirardim, yomon kunlar ham bo'lardi, lekin qat'iyatli bo'lish oson emasligini tushunardim. Va shuni ham tushunardimki, bu meni oldinga intilishim uchun kalit edi. Ya'ni, aniq qilib aytganda, men vaqtimni va kuchimni o'zimga achinish bilan sarflamas edim. Men o'zimni yaqin insonlarim bilan o'rayman va oldinga intilishda davom etaman. Va shunday bir kayfiyat bilan, umid qilamanki, hammangiz, nima bo'lishiga, to'siqlarga qaramay baxtli hayot kechira olasizlar. To'xtang, yana bir soniya, yana bitta kichik maslahat — (Kulgu) Ziyofatlarni o'tkazib yubormang, agar sizga bu yoqsa. Bizning maktabimizda ertaga bitiruvchilar balli, va men u yerda bo'laman. Katta rahmat sizlarga. (Qarsaklar)