WEBVTT

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[music]

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Look all the way in front. To the

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right. Down. Left.

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Look at me.

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Okay? You\'re doing great.
My name is Jessica,

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and I am a very unique person. I\'m
eleven years old. My birthday is July

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13th, and my nickname is \'Peanut\'.
I like to play soccer and I

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like to do gymnastics. I have an eye problem
called Stargardt\'s. Stargardt\'s is a

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problem in the retina. E.
Okay.. can you see

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that? Mm-mm. Vision is exactly the
same, that itself has not changed.

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Do you notice any difference at all?
Not really. I

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don\'t expect it. Okay. She is as stable could
be. We first noticed it when she\'d be watching

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television, and we\'d see her up against the TV screen,
and we thought it was just something that she was doing,

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you know, naturally or... Kids do. Yeah. So we\'d say \'Jess,
get away from the screen\' and then it happened more and

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more, and then I guess we got a call from school,
or she went for a test? We went to a local

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optometrist and just had it checked
and he said \'Well, she\'s 20/30, not a

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problem.\' But the following year she was
complaining again, and she was 20/100 at that

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point. She could not read the eye
chart at all, and I was shocked.

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How you doin\'? They did not know
what it was. The eye doctor

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actually said to me \'You know, some little
girls just want glasses\', and I\'m like

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\'Oh really?\'. They started to
think she was faking it, because

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when they started putting in the magnifiers, she was
the exact same. So they didn\'t do any diagnosis

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other than \'there\'s a problem\'. And we didn\'t know
what the problem was. Take a seat, let me take a look.

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The retina is best thought
of like a camera,

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taking all the information that comes
into one\'s eye, doing all the processing.

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The retina has rods and cones. The
rods give us peripheral vision,

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depth perception. The cones
is the center vision.

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When you have Stargardt\'s disease, the part of
your vision that is predominantly affected is the

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center of your vision; the macula. Can you
see these little pigment changes and these

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subtle changes right here? That\'s where
the problem is. Okay, and that\'s why

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Jess has so much trouble looking straight on. So, is the
size of that related to the amount of the blockage?

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That\'s exactly the area that Jess is not seeing. (crosstalk)What\'s that white part?
(crosstalk)So somebody else could actually have a wider... Oh yeah, it could

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extend. In her, I do not anticipate it.
This really looks very stable.

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Somebody with Stargardt\'s will still
have very good depth perception,

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will be able to walk off the curb of a sidewalk,
it\'s just when you\'re looking straight on

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that you have the most difficulty.
Jessica uses her peripheral vision

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to see all the time. And, it\'s a strange
disease because Jessica is legally blind,

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but you can see her running around and she
doesn\'t bang into things. It\'s easy to

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forget that she has an eye problem. You guys are playing
great. Where\'s my water bottle? I don\'t know, go check.

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Where is she? Do you guys... Hey, listen. You know
they\'re a fast breaking team and they like to hang.

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If they come back deep, get behind them.
What makes you think I know where she is?

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Did you guys bring her water? You can
tend to forget that she has Stargardt\'s.

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For me, it\'s a safety issue. Like, she loves to
ride her bike, and now she wants to ride kind of

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away from the house. And she goes \'Dad, I know my way around,
I can find my way back home, why don\'t you just let me go?\'

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and I\'m not going to say it\'s \'cause I don\'t think
you can see very well. So I just keep saying

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\"Eh, it\'s not safe\' you
know \'we\'ll go together\'.

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Everything in the middle, it\'s just
not there. It\'s not dark, it\'s not

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white, it\'s not black. It\'s
sort of just disappears.

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Sometimes it takes the color of the
things around it, or sometimes it\'ll just

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be a huge grey blur spot. Oh, it

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skipped!

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I look up to someone most
people don\'t know. Her name

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is Marla Runyan. She is a
runner who is similar to me.

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Marla Runyan takes the lead,
followed by Amy Rudolph, and Shelayn

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Flannigan. Runyan is legally blind,
a remarkable success story. In 2000

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she became the first legally blind athlete to compete
in the Olympic games, and it looks like she\'ll

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be the winner today at the Boston High Performance.
Other than Marla Runyan, we don\'t know of anyone

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else that has Stargardt\'s, so she\'s very inspirational
for Jessica. As they come into the home

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stretch it\'s Runyan, Rudolph, Flannigan...
and Runyan wins at under 15! (inaudible)

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That\'s an official time of

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14: 59: 20. Murray Davis
coming down from the

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Nike (inaudible) team.
Stargardt\'s has taken away my

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ability to see detail. Anything
that\'s not grand in scale

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is not gonna be clear to me, so I
see the larger things. I see a

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person moving, but reading a stopwatch;
can\'t do it. I don\'t see that.

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2:12! I don\'t see clearly at distances
longer than 30 feet. When I go out to the

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track, it looks enormous Because
I go out there, I can\'t

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necessarily see the other side. In fact, if
there\'s hurdles in the way I wouldn\'t know.

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Marla races best when she races against opponents.
For one, normally when you get in the big

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races in Europe, she can\'t see the clock
anyways and she can\'t hear the announcer.

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So the only thing she has left to do is to race. The
fact that I can\'t see the clocks is not a good thing.

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I\'m not gonna sugarcoat it and say \'Oh, it makes me better,
makes me faster, stronger, and more-\' No, it\'s not

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true. Um, you know, I really believe that if
I could see the clocks it would be helpful.

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So, it is kind of a slight disadvantage. My thinking
is that, I get into the race, and if I can just

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get in there and compete, then the time will work
itself out. Good job, Marla. Hey, thanks [sp]Kenneth.

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Since my vision has been
this way for over 20 years,

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I\'ve forgotten what it\'s like
to see normal. This picture

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is from the sixth grade, and this was
a little athletic competition for

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all of the visually handicapped kids in
school which, was called \'VH\', and as you

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can tell I didn\'t enjoy it.
I was very unhappy that

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day and I didn\'t really care
much for segregated activity.

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There she is! Jessica in her element. Let\'s
go through the different people next to

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you. Jessica is in a regular school. It\'s nice
because she\'s had pretty much the same class-mates

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since kindergarten. We have large
books in every single class.

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Large books are sort of a hassle because
they\'re really heavy. From one small book

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that one of my friends uses, it\'s about
four big books for me. What\'s that word

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\'and\' called? What part of speech?
And, or, but, nor?

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Conjunction. Conjunction.
When I read most of the time

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I strain my eyes, which
will give me the biggest

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headache. I can go up to the board

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anytime I want. But, it means that
everybody\'s gonna say something

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and I have voices in my head going \'Jess, go
to your left\' \'Jess, go to your right\'. Bryan,

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do you everything copied? Maria, do you have
all these... My classmates. They goof off

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when they want to, they talk when they want
to. Everybody look up here! I work so hard so

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I can do the same stuff they do. If they were in my
shoes for two seconds, they\'d fall on the ground and

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cry. Is it okay if you don\'t
spell people\'s names right? To

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see how much more responsible
she is, is amazing. In the

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fifth grade her eyesight was deteriorating. She
decided that she\'d like to stand up and tell the

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class. She stood up in front of 20 other fifth
grader and said \'Look, I can\'t see your faces

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anymore. When we\'re outside playing soccer,
you need to tell me who I\'m kicking the ball

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to.\' And, for this young lady to stand up, at
ten years old, in front of all these other

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children, and to tell them this, was one of the most
courageous things I\'ve ever seen. It makes her feel better

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because now she knows that they understand
what she\'s going through. You coming to

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practice? I hope we do a lot of running.
\'Dear Peanut, congratulations

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on your soccer award. What
position do you play? I

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play center halfback so that I can

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run around the entire field.\' That\'s like

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me! Look, she did a little smiley face for
you there. Do you see that? \'Maybe in the

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future you can run the
5k.\' That\'s what she runs,

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Jess. \'Well, take care, good luck
in school, and keep running.

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I hope to see you again in the near future.

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Marla.\' Ah, that was great. Yeah that was great.
That was cool. Yeah, very nice. Can we print it?

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To me, wanting to connect to
somebody who understands, I think

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that\'s a good feeling to have, is just be able to have
that connection with someone. Because in a day to day

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life, I\'m never going to meet another person
who knows what I see. But, even if you

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look back in the sixth grade, I wasn\'t a
big fan of segregation and if I believe

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that my vision doesn\'t affect my running, I wanted to
competed against the best in the world, not just the

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best blind runner. 20!

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21! 22! 23! (inaudible)

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. And our (inaudible)

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women\'s champion from the (inaudible)

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three time winner (inaudible) Marla Runyan!

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[sil.]

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Thank you again to our race organizer,

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George Reegan, and also thank you to
Fry Hoppers for their unbelievable

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support. They keep this place going
and they keep us coming back

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year, after year, after year. But also I wanted to say to
take a good look at all these ladies up there on the stage.

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These are some incredible runners.
We run with our hearts, we love our

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sport, and if you\'re looking for role models you don\'t
need to look very hard. We\'re right here, and uh,

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we\'re going to be representing the United
States this year in the Olympic Games.

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[sil.]

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It says \'Marla Runyan autograph signing

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noon to 12:45\'. Thank you so much for
the beautiful email that you sent to

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us after we met you in New York.
This is Jessica and Janet, and we

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brought a picture we were wondering if you could
sign? Hi Matt, how are you? That\'s a nice picture.

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That one is the same one, but Jessie signed
it for you. Oh, so that\'s for me? Yes.

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Oh, thank you! I was thinking of you guys and
I thought \'Well, I know her name\'s peanut\'.

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To meet Marla Runyan was amazing,
and showing us that the world

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was open to Jessica even though she has
Stargardt\'s. Even though Jessica knew there was

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no cure for it, it was enlightening to
her to see someone in their 30\'s with

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Stargardt\'s saying \'Gee, she is older
and still has it\". Start right here.

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Don\'t forget, don\'t stop where they\'re starting, but run all the
way to the bottom. A lot of kids are slowing down right here.

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As far as Jessica\'s limitations, we don\'t know what
they are. We know what they are when it comes to

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watching television, we know what they are when it comes to
reading a book, but when it comes to the future we don\'t know.

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We don\'t know her limitations and it makes us a little
careful, but Jessica seems to know what they are.

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[sil.]

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What place did I get? What? How many people
were in front of me? I\'m not sure. Dad! Aw!

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It looked like four, maybe. Dad that\'s not
fair, you promised you\'d count. I tried,

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baby. (inaudible) How did you
think you did? I don\'t know!

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You did great. You promised me
that you\'d count! I think four.

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I think four! It could have been three.
It was three or four.

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This is who I am now. In the future I
may be a photographer, a gymnast, a

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horse-back rider, a soccer player, an
author, an illustrator, or maybe even

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President of the United States.
Well, we\'ll just have to

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wait and see. That\'s my goal,
to be President of the

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United States. First girl president.

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[music]