Just before his passing on January 10, 2014, Sam Berns was a Junior at Foxboro High School in Foxboro, Massachusetts, where he achieved highest honors and was a percussion section leader in the high school marching band. He also achieved the rank of Eagle Scout in the Boy Scouts of America. Sam was diagnosed with Progeria, a rare, rapid aging disease, at the age of 2. He is featured in the Emmy award-winning documentary Life According to Sam, which premiered on HBO on October 21, 2013, 2 days before his 17th birthday.
My philosophy for a happy life | Sam Berns
Transcripts of the Video:
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okay so hello everyone I’m Sam and I
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just turned 17 a few years ago before my
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freshman year in high school I wanted to
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play snare drum in the Foxborough high
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school marching band however and it was
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a dream that I just had to accomplish
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but each snare drum and harness weighed
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about 40 pounds each and I have a
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disease called progeria so just to give
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you an idea I weigh about only 50 pounds
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so logistically I really couldn’t carry
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a regular-sized snare drum and because
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of this the band director assigned me to
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play pit percussion during the halftime
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show now pit percussion was fun it
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involves some really cool auxilary
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percussion instruments like the bongos
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timpani and Tim ballets and cowbell so
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it was fun but it involved no marching
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and I was just so devastated however
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nothing was gonna stop me from playing
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snare drum with the marching band in the
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halftime show so my family and I worked
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with an engineer to design a snare drum
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harness that would be lighter and easier
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for me to carry
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and so after continuous work we made a
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snare drum apparatus that weighs only
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about six pounds
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I’m just gonna give you some more
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information about progeria it affects
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only about 350 kids today worldwide so
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it’s pretty rare and effects of progeria
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include height skin
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lack of weight gain stinkies growth and
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heart disease last year my mom and her
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team of scientists published the first
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successful progeria treatment study and
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because of this I was interviewed on NPR
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and John Hamilton asked me the question
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what is the most important thing that
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people should know about you my answer
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was simply that I have a very happy life
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thanks so even though there are many
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obstacles in my life with a lot of them
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being created by progeria I don’t want
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people to feel bad for me I don’t think
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about these obstacles all the time and
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I’m able to overcome most of them anyway
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so I’m here today to share with you my
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philosophy for a happy life so for me
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there are three aspects to this
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philosophy so this is a quote from the
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famous Ferris Bueller the first aspect
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to my philosophy is that I’m okay with
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what I ultimately can’t do because
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there’s so much that I can do now people
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sometimes ask me questions like isn’t it
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hard living with progeria or what daily
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challenges our progeria do you face and
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I’d like to say that even though I have
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progeria most of my time is spent
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thinking about things that have nothing
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to do with progeria at all now this
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doesn’t mean that I ignore the negative
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aspects of these obstacles when I can’t
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do something like run a long distance or
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go on an intense roller coaster you know
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I know what I’m missing out on but
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instead I choose to focus on the
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activities that I can do throw things
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that I’m passionate about like scouting
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or music or comic books or any of my
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favorite Boston sports teams
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so however sometimes I need to find a
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different way to do something by making
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adjustments and I want to put those
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things in the can-do category kind of
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like you saw with the drum earlier so
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here’s a clip with me playing spider-man
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with the Foxborough high school marching
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band at halftime a couple years ago
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alright that was pretty cool and so I
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was able to accomplish my dream of
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playing snare drum with the marching
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band as I believe I can do for all of my
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dreams so hopefully you can accomplish
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your dreams as well with this outlook
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next aspect to my philosophy is that I
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surround myself with people that I want
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to be with people of high quality I’m
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extremely lucky to have an amazing
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family who have always supported me
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throughout my entire life and I’m also
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really fortunate to have a really close
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group of friends at school now we’re
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kind of goofy a lot of us are band geeks
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but we really enjoy each other’s company
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and we help each other out when we need
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to we see each other for who we are on
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the inside so this is us goofing off a
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little bit and so we’re juniors in high
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school now and we can now mentor younger
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band members as a single collective unit
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what I love about being in a group like
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the band is that the music that we make
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together is true it’s genuine and it
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supersedes progeria so I don’t have to
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worry about that what I’m feeling so
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good about making music but even having
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made a documentary going on TV a couple
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times I feel like I’m at my highest
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point when I’m with the people that
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surround me every day they provide the
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real positive influences in my life as I
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hope that I can provide a positive
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influence in theirs as well
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thank you so the bottom line here is
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that I hope that you appreciate and love
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your family love your friends for you
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guys love your bros and acknowledge your
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mentors and your community because they
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are very real aspects of everyday life
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that can make a truly significant
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positive impact
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so the third aspect to the philosophy is
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keep moving forward here’s a quote by a
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man you may know in Walt Disney and it’s
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one of my favorite quotes I always try
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to have something to look forward to
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something to strive for to make my life
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richer it doesn’t have to be big it
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could be anything from looking forward
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to the next comic book to come out or
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going on a large family vacation or
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hanging out with my friends to go in the
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next high school football game however
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all of these things keep me focused know
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that there’s a bright future ahead and
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may get me through some difficult times
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that I may be having now this mentality
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includes staying in a forward-thinking
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state of mind I try hard not to waste
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energy feeling badly for myself because
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what I do I get stuck in a paradox where
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there’s no room for any happiness or any
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other emotion now it’s not that I ignore
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what I’m feeling badly I kind of accept
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it
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I let it in so I can not acknowledge it
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and do what I need to do to move past it
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when I was younger I wanted to be an
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engineer I wanted to be an inventor who
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would catapult the world into a better
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future
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maybe this came from my love of Legos
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and the freedom of expression that I
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felt when I was building with them and
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these was also derived from my family
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and my mentors who always make me feel
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whole and good about myself now today my
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ambitions have changed a little bit I’d
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like to go into the field of biology
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maybe cell biology or genetics or
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chemistry or really anything and this is
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a friend of mine who I look up to
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Francis Collins the director of the NIH
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and this is us at Ted med last year
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chatting away I feel that no matter what
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I choose to become I believe that I can
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change the world and as I’m striving to
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change the world I will be happy about
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four years ago
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HBO began to film a documentary about my
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family and me called life according to
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Sam now it was a pretty great experience
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but it was also four years ago and like
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anyone my view is on many things have
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changed and hopefully matured like my
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potential career choice however some
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some things have stayed the same
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throughout that time like my mentality
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and philosophy towards life so I would
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like to show you a clip of my younger
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self from the film that I feel embodies
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that philosophy I know more about it
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genetically
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so it’s less of an embodiment now it
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used to be like this thing that prevents
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me for doing all this stuff that causes
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other kids to die that causes everybody
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to be stressed and now it’s you know a
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protein that is abnormal but weakens the
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structure of cells and it takes a burden
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off of me because now I don’t have to
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think about progeria as an entity okay
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pretty good huh yeah yeah thank you so
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as you can see I’ve been thinking this
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way for many years but I never really
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had to apply all of these aspects of my
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philosophy to the test at one time until
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last January I was pretty sick I had a
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chest cold and I was in the hospital for
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a few days but and I was secluded from
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all the aspects of my life that I felt
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made me me that kind of gave me my
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identity but knowing that I was going to
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get better and looking forward to a time
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that I would feel good again helped me
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to keep moving forward and sometimes I
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had to be brave and it wasn’t always
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easy sometimes I faltered I had bad days
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but I realized that being brave isn’t
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supposed to be easy and for me I feel
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it’s the key way to keep moving forward
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so all in all I don’t waste energy
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feeling bad for myself I surround myself
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with people that I want to be with and I
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keep moving forward so with this
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philosophy I hope that all of you
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regardless of your obstacles can have a
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very happy life as well oh wait hang on
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a second one more piece of advice
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never miss a party if you can help in my
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school’s homecoming dance is tomorrow
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night and I will be there thank you very
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much
