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Channel / Source:
TEDx Talks
Published: 2013-12-13
Source: https://www.youtube.com/watch?v=36m1o-tM05g
okay siloed ruling I'm Sam and I just turned seventeen a few years ago before my freshman year of high school I wanted to play snare drum in the Foxboro high school marching band however it was a dream that I just had to accomplish but each snare drum in harness wait about forty pounds each and I have a disease called progeria so just to give you an
idea I weigh about only fifty pounds so logistically I really couldn't carry a regular sized snare drum and because of this the band director so I need to play pit percussion during the halftime show Nell pit percussion was fun and it involves some really cool auxiliary percussion instruments like the bongos timpani and Tim ball Leisen cowbell so it was fun none but involve no marching in
I was just so devastated however nothing was gonna stop me from place their job with the marching band in the half time show so my family and I worked with an engineer to design a snare drum harness that would be lighter in easier for me to carry and so after continuous work a we made a snare drum apparatus that weighs only about six pounds and just
so you know give you some more information about pretty area undo it affects only about three hundred and fifty it's today worldwide so it's pretty rare and affect suffered urea include tight skin lack of it gained us stunted growth and heart disease last year my mother in her teens typists published the first successful pre Jiri a 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 thank 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 am able to overcome most of them anyway so I'm here today share with you my philosophy for a happy life so for me there are three 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 was when I ultimately it do because they're so much that I can't you know
people sometimes ask me questions like isn't it hard living with progeria or what daily challenges are pretty area do you face and I'd like to say that even though I have prayed urea most of my time is spent thinking about things that have nothing to do with pretty area at all now this doesn't mean that I nor the negative aspects these obstacles well I can't do
something like let alone distance or go on an intense roller coaster you know I I know what I'm missing out on but instead I choose to focus on the activities like and you throw things that I'm passionate about thank you scouting or music or comic books or any of my favorite Boston sports teams so 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 drummer earlier so here is a clip with need playing spider man with the Foxboro high school marching band at half time a couple years ago and I don't those pretty cool and so I was able to accomplish my dream of place they're done 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 next aspect to my philosophy is that I surround myself with people that I want to be with people of high quality I am extremely lucky to have an amazing family will 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 gonna tell you feet a lot of us are band geeks but we really enjoy each other's company and we help each other out we need to we see each other for who we are on the inside so this is askew fill up a little bit and so we're juniors in high school now and we
can now mentor younger band members and 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 it's genuine and it supersedes pretty Syria so I don't have to worry about that when I'm feeling so good about making music but even having made a documentary we're going on TV a couple times
I feel like I'm at my highest point when I'm with the people that surround me everyday they provide the real positive influences in my life as I hope that I can provide a positive influence in theirs as well so the bottom line here is that I hope that you appreciate and love your family love your friends for you guys love your Bros and yeah acknowledge your
mentors and your community because they are very real aspects of everyday life they can make a truly significant positive impact so the third aspect to the philosophy is keep moving forward here's a quote by and then you may know in Walt Disney it's one of my favorite quotes I always try to have something to look forward to as something to strive for to make my life
richer doesn't have to be big it could be anything from a looking forward to the next comic book to come out or Gillian large family vacation or hanging out with my friends to go on the next high school football game however all of these things keep me focused 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 my I try hard not to waste energy feeling badly for itself because when I do I get stuck in a paradox where there's no room for any happiness or any other emotion no it's not that I nor when I'm feeling badly I kind of accepted I let it in so I can not acknowledge it
and do what I need to do to move past it when I was younger I wanted to be an engineer I want to be an inventor the catapult the world into a better future maybe this came from I love of legos and the freedom of expression and I feel when I was building with them and these was also derive from my family and my mentors who
always make me feel whole good about myself now today my ambitions have changed a little bit I'd like to go into the field of biology may be cell biology or genetics or biochemistry or really anything and this is a friend of mine who I look up to Francis Collins the director of the NIH and this is us at Ted led last year chatting away I feel
that the letter what I choose to become I believe and 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 save him does a pretty great experience but it was also four years ago and like anyone my views on many things
I changed it hopefully matured like Maya potential career choice however some some things stay 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 east Indian like this thing that prevents
you from doing all the stuff that because other kids to dis that because there are many duties trashed and now it's done a protein that is abnormal that we can structure Charles and it takes a burnt offering me because now I don't have to think about preview area as it did T. if he's gonna that they have thank you so as you can see I've been
thinking this way for many years but I 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 I was in the hospital for a few days but and die was secluded from all of the aspects of my life that I felt made me meet that kind of
gave me by 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 it wasn't always easy sometimes I faltered I had bad days but I realize that being brave isn't supposed to be easy and for me I feel it's the key way
to keep moving forward so although 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 au lait hang on a sec one Laura piece of advice never miss a party if you
