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A few years ago, before my freshman year in High School,

I wanted to play a snare drum in   the Foxboro High School Marching Band,

我想要在Foxboro高中的步操樂隊打軍鼓

and it was a dream that I just had to accomplish.

weighed about 40  pounds each, and I have a disease called Progeria.

每個大約重40磅,.而我得了早衰症

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,

所以邏輯上,我無法承受正常大小的軍鼓,

and because of this, the band director assigned me   to play pit percussion during the halftime show.

因為這樣,樂團指揮指定我在在中場休息表演負責敲打樂器

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.

所以很有趣但它沒有包含行軍,我感到身心疲乏

from playing snare drum with the marching band in a halftime show.

和軍樂隊一起在中場休息打軍鼓

So my family and I worked with an engineer to design snare drum   harness that would be lighter, and easier for me to carry.

所以我和家人一起改造一個對我來說更輕更簡單的軍鼓帶

So after continuous work, we made  a snare   drum apparatus that weighs only about 6 pounds.

在持續的工作下,我們完成了大約只有6磅的軍鼓

I just want to give you some more information about Progeria.

我只是想給你們多一些早衰症的資訊

It affects only about 350 kids today, worldwide.

現今全世界大約有350個小孩罹患此症

tight skin, lack of weight gain, stunted growth, and heart disease.

皮膚緊繃,體重輕,發育不良,和心臟疾病

Last year my Mom and her team of scientists   published the first successful Progeria Treatment Study,

去年我媽和她的科學家團隊發表了第一個成功早衰症的治療學說,

and because of this I was interviewed on NPR,

“What is the most important thing that people should know about you?”

‘你覺得大家知道關於你什麼事是最重要的?’

So even though there are many obstacles in my life,

with a lot 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.

所以我今天才在這裡分享我的快樂人生哲學

So, for me, there are 3 aspects to this philosophy.

So this is a quote from the famous Ferris Bueller.

The first aspect of my philosophy is that

I’m okay with what I ultimately can’t do.

對於我做不到的事我覺得沒關係

Now people sometimes ask me  questions like,

“Isn’t it hard living with Progeria?” or

’患有早衰症是不是活得很辛苦?’或是

“What daily challenges of Progeria do you face?”

‘你每天因為早衰症而需要面對的挑戰是什麼?’

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.

大部分的時間我都在想跟早衰症完全無關的事情

When I can’t do something like  run a long   distance, or go on an intense roller coaster.

這不代表我忽略這些障礙帶來的負面觀點

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.

但相反的,我選擇專注在我可以而且有興趣的活動上,

However, sometimes I need to find a different   way to do something by making adjustments,

像是童子軍活動,音樂,漫畫書,或任何我愛的波士頓球隊

and I want to put those things in the “can do” category.

無論如何,有時我必須找不同方法來調整一些事,

Kind of like you saw with the drum earlier.

我想把它們放在’可以做’的類別

with me playing Spiderman with the Foxboro High School Marching   Band at halftime a couple of years ago.

幾年前在Foxboro高中軍樂隊時我們演奏蜘蛛人

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.

和軍樂隊打軍鼓,就像我相信我可以做到我全部的夢想

藉由這觀點,希望你們可以完成你們的夢想

that I surround myself with people I want to   be with,  people of high quality.

I’m extremely lucky to have an amazing family,

我讓自己環繞在我喜歡的人身邊,有才能的人

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,

我也很幸運在學校有一群親密的好朋友們

but we really enjoy each other’s company,

現在我們有點傻,我們很多都是樂團怪咖

and we help each other out when we need to.

We see each other for who we are on the inside.

and we can now mentor younger band members, as a single collective unit.

What I love about being in a group like the band,

我們可以在樂團裡教較資淺的成員當作一個集體單位

我最喜歡像樂團一樣組成一組的原因是

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.

是那麼真實,真誠,讓我忘卻了早衰症

But even having made a documentary, going on TV a couple of times,

當我在享受音樂我根本忘了這件事

I feel like I’m at a highest point when I’m   with the people that surround me every day.

當在做紀錄片或是上了好幾次電視,

They provide the real positive influences in my life,

當我跟每天和我相處的人一起我好像是個關注點

as I hope I can provide a positive influence in theirs as well.

他們在我生活中給了很多正面影響,

就像我也希望可以給他們正面能量

is that I hope that you appreciate and love your family,

love your friends, for you guys, love you Bro’s

我希望你們感謝以及愛你們的家人,

and acknowledge your mentors, and your community,

愛你們的朋友,為了大夥,愛你們的兄弟

because they are a very real aspect of everyday life,

they can make a truly significant, positive impact.

因為它們是你每天生活很重要的一環,

它們可以給你們很重要很正面的影響

Here’s a quote from by a man you may know, named Walt Disney,

I always try to have something to look forward to.

Something to strive for to make my life richer,

某個我可以盡我最大的努力來豐富我生活的事物

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.

它可以是任何事務,像是下一期的漫畫,

However, all of these things keep me focused, and   know that there’s a bright future ahead,

去家庭度假,和朋友出去玩,參加下次的高中足球隊

and may get me through some difficult times that I may be having.

我專注在這些事而且知道我有美好的未來

Now this mentality includes staying in a forward thinking state in mind.

也可能幫我在未來面對難題時度過

美國有名罹患早衰症（progeria）的少年山姆伯恩斯（Sam Burns）從1歲大就被診斷出罹患此疾。衰老速度是正常人的8倍，臉上的皺紋和禿頭，讓他比同齡孩子蒼老許多。早衰的病痛讓山姆生活極不便，每天吃藥，外出也受到他人指指點點。 然樂觀的山姆沒被病魔所擊倒，他認為這是上天給他的考驗。他樂於助人、永遠笑口常開，更是班上同學的「數學小老師」，同學都樂於向他請教。山姆說，「就算遇到問題，我們生命中總有快樂餘地！克服考驗之餘，謹記做人最緊要快樂，要盡力過一個快樂人生。」...