SAM progeria

[소올]

"제가 할 수 없는 것들에 대해서는 아무렇지 않습니다. 왜냐하면 제가 할 수 있는 것들이 정말 많기 때문이죠."

"이 세상을 바꿀 수 있다고 믿습니다. 그리고 세상을 바꾸려 노력하면서 저는 행복할 거에요."

progeria는 pro라는 접두사에
geria라는 어근이 만나서 조기노화 라는 뜻이다.
geriatrics 란 노인학이다.

Sam Berns는 18세의 나이에 노화로 사망한다.

October 23, 1996 – January 10, 2014

그는 비록 짧은 삶을 살았지만 행복한 생을 즐겼고 사랑을 나누었다.
장애가 많았지만 할 수 없음에 절망하기보다
있음을 바라보는 삶이었다.

https://youtu.be/Fekab9Pu2us
그를 추모하는 동영상

TED 동영상
https://youtu.be/36m1o-tM05g

위 테드 연설 후 얼마지나지 않아서 사망함.
연설할 때도 호흡이 조금 가쁘게 들렸다.

다음은 연설문 내용 일부(영어자막으로 보면 쉽게 파악 가능함)
my philosophy for a happy life in TED

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.

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.

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.

“Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.” – Ferris Bueller



“I’m okay with what I ultimately can’t do”

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.

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 Presentation]

Spider-Man theme song? 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.

“I surround myself with people I want to be with”

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 areㆍ 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

[다모(茶母)]

내가 절대적으로 할 수 없어도 나는 괜찮아~ 왜 나는 할 수 있는 것이 넘 많기 때문입니다. 이는
영축사실학교에서 말하는
'있음을 보라'는 것과
같다고 봅니다.

[소올]

네!
다모!
기뻐요.

[다해]

감사합니다!

있음을 보는 삶!
을 삽니다!

[나무행]

네
있음을 봅니다
감사합니다