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Transcriber: Rachel Lam
Reviewer: David DeRuwe
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Hi everyone.
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My name is Michiel Vandeweert,
and I'm 19 years old.
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At the age of five,
I was diagnosed with progeria,
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an aging disease involving
a mutation in the LMNA gene,
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which causes my cells to malfunction.
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As a result, I remain small
and I don't grow any hair.
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I was born just like a normal baby,
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but after a few months,
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my parents noticed something was wrong
with my development physically.
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Worldwide, there are
only 144 kids with progeria
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and their average age is 12.
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So as I like to put it,
seven years and overtime.
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Life with progeria wasn't always easy.
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In primary school, kids called me "Alien,"
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and one day, I was only six,
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a boy walked up to me and said
that I would die when I was 12.
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So I came home crying.
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That's when my mom
explained to me everything:
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that I would always remain small,
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that I wouldn't grow any hair,
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that I wouldn't be as strong
as my friends,
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and that I would die at a young age.
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In 2006, when I was eight years old,
my sister Emma was born.
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To my parents' relief,
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the doctors told us
that she was perfectly healthy.
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Two weeks later though, Emma got ill.
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And my dad, who started to get worried,
insisted on a blood test.
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I still remember very well
how we went into a very small room
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together with the doctor
to learn about the test results.
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Emma turned out to have progeria too.
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And my mom? She broke into tears.
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I sat on her lap.
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I turned around and said,
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"Mom, why are you crying?
It's not that bad.
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Now Emma can experience all the fun things
that I got to do thanks to progeria,
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such as the reunions,
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and meeting all the nice people
that I got to know."
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And I didn't even mention the fact
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that she didn't have
to wait in line at amusement parks.
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(Laughter)
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And that's exactly who I am.
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Despite me and my sister's disease,
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I look on the bright side of life
and try to live each day to its fullest.
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People often ask me
where I find strength to keep going.
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Well actually, there are three things
that keep me ticking.
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Those things, I want to share with you.
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First, my family and friends.
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These are my mom and dad,
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and they always made sure
that I had the best life that I could get.
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In fact, if there was one reason
that I managed to accept my disease,
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it's because they raised me
in such a positive way,
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and they always encouraged me
to experience as much as I could
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in my short life.
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Whether it was going to a festival,
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throwing a party,
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or doing a TED talk.
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Furthermore, I'm blessed
with amazing friends
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who support me through thick and thin.
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Last year, when my friends and I
graduated from high school,
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they gave me a book.
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Right on the front, a photo of me,
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and the title saying:
"More than a Legend."
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On the inside,
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photos of all kinds of fun things
that we did together,
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and it made me realize again
how much these goofballs mean to me.
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The second important element
in my life are challenges.
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And one of those challenges are sports.
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I used to play football,
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but I had to quit because I wasn't
big enough anymore,
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and I wasn't strong enough.
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My dad used to compare me
to Stuart Little, the mouse.
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He said, "One day,
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one of your friends will kick the ball
so hard that you will be stuck to it
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and fly straight into the goal with it."
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At least I would've scored a goal.
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(Laughter).
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But anyway, I had to quit.
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Fortunately, I came across snowboarding.
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After my first snowboarding experience,
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I immediately bought my own snowboard
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and went on a skiing holiday
together with my dad.
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And this was amazing.
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Four days, nothing but snowboarding.
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And the best thing about snowboarding:
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flying past all those big people
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and leaving them wondering
how this little kid could be so good.
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Then in two weeks,
I'm going on another skiing holiday.
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And I'm really looking forward to it.
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Then, at a reunion in Denmark,
I was introduced to go-karting.
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The adrenaline that go-karting
gave me was amazing.
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I even went racing with the dads,
and I got fifth out of eight.
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Not too bad for a 15-year-old
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who was only one meter
and 25 centimeters tall, right?
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When I came home,
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I immediately started go-karting
at a club in my neighborhood.
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And they saw how much I enjoyed it
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that they gave me my own cart
and my own suit.
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But go-karting was just a step towards
an even bigger goal -
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getting my driver's license.
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So when I turned 17,
my father challenged me.
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He said, "If you pass
your theoretical exam
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before we leave on holiday,
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we will pay for your car.
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So the day before we went on holiday,
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I went for my theoretical exam.
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And guess what? I passed.
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A year later,
on the day that I turned 18,
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I couldn't wait,
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I went for my practical exam.
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And guess what? I passed again.
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And yes, I got my car.
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I've been driving
for almost two years now,
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and it's amazing.
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Not being dependent on anyone,
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and I can go wherever I want,
whenever I want.
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But apart from family, friends,
and taking up challenges,
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there is one more thing
that brightens up my day.
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And that's moments like this one.
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Moments in which I can talk
about life with progeria.
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By talking about my disease,
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I want to make people aware
of its consequences.
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As such, I hope I can make
a difference for my sister,
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the other 142 progeria kids,
and the whole progeria community.
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It's for these guys that I do it.
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But also, I hope I can make
a difference for you.
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We all have a bad day now and then,
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and sometimes, life can be bluntly unfair.
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But hey, with a nice family,
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some great friends,
and some exciting challenges,
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you can come a long way already.
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So don't complain about the things
you're not capable of,
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but show the world
what you are capable of.
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Because life's too short.
Make the most of it.
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Oh, and never forget
to take a smart phone with you,
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so you can capture the beautiful moments.
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Just like this one.
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(Applause)
