Life's short, make the most of it | Michiel Vandeweert | TEDxUHasselt

Imagine growing up with the knowledge that you will only live until your mid-teens to early twenties. It is a harsh rationale, but nonetheless a regrettable reality for individuals affected by progeria. Worldwide, nearly one of four million newborns are affected with this extremely rare genetic disorder. While aging at an incredibly fast rate, patients with this incurable disease are left with only one option: to enjoy their life to the fullest.

Belgian Michiel Vandeweer, 19, suffers from progeria. Despite the limitations and the negative effects of the disease, Michiel tries to enjoy his life to the fullest, even though he realizes that most people with his condition die around the age of 14. His condition forms no barrier between him and his dreams: being a DJ, getting his drivers’ license, or getting a job. With this attitude, Michiel hopes to be a source of inspiration to everyone around him. His life is an immense challenge with an unknown outcome, but even with all the inconveniences, Michiel’s positive attitude in life is remarkable. Despite statistics showing that he would live a shortened life, it is impressive to see how Michiel is living his life like any other person his age.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx

Hi everyone.

My name is Michiel Vandeweert,
and I'm 19 years old.

At the age of five,
I was diagnosed with progeria,

an aging disease involving
a mutation in the LMNA gene,

which causes my cells to malfunction.

As a result, I remain small
and I don't grow any hair.

I was born just like a normal baby,

but after a few months,

my parents noticed something was wrong
with my development physically.

Worldwide, there are
only 144 kids with progeria

and their average age is 12.

So as I like to put it,
seven years and overtime.

Life with progeria wasn't always easy.

In primary school, kids called me "Alien,"

and one day, I was only six,

a boy walked up to me and said
that I would die when I was 12.

So I came home crying.

That's when my mom
explained to me everything:

that I would always remain small,

that I wouldn't grow any hair,

that I wouldn't be as strong
as my friends,

and that I would die at a young age.

In 2006, when I was eight years old,
my sister Emma was born.

To my parents' relief,

the doctors told us
that she was perfectly healthy.

Two weeks later though, Emma got ill.

And my dad, who started to get worried,
insisted on a blood test.

I still remember very well
how we went into a very small room

together with the doctor
to learn about the test results.

Emma turned out to have progeria too.

And my mom? She broke into tears.

I sat on her lap.

I turned around and said,

"Mom, why are you crying?
It's not that bad.

Now Emma can experience all the fun things
that I got to do thanks to progeria,

such as the reunions,

and meeting all the nice people
that I got to know."

And I didn't even mention the fact

that she didn't have
to wait in line at amusement parks.

(Laughter)

And that's exactly who I am.

Despite me and my sister's disease,

I look on the bright side of life
and try to live each day to its fullest.

People often ask me
where I find strength to keep going.

Well actually, there are three things
that keep me ticking.

Those things, I want to share with you.

First, my family and friends.

These are my mom and dad,

and they always made sure
that I had the best life that I could get.

In fact, if there was one reason
that I managed to accept my disease,

it's because they raised me
in such a positive way,

and they always encouraged me
to experience as much as I could

in my short life.

Whether it was going to a festival,

throwing a party,

or doing a TED talk.

Furthermore, I'm blessed
with amazing friends

who support me through thick and thin.

Last year, when my friends and I
graduated from high school,

they gave me a book.

Right on the front, a photo of me,

and the title saying:
"More than a Legend."

On the inside,

photos of all kinds of fun things
that we did together,

and it made me realize again
how much these goofballs mean to me.

The second important element
in my life are challenges.

And one of those challenges are sports.

I used to play football,

but I had to quit because I wasn't
big enough anymore,

and I wasn't strong enough.

My dad used to compare me
to Stuart Little, the mouse.

He said, "One day,

one of your friends will kick the ball
so hard that you will be stuck to it

and fly straight into the goal with it."

At least I would've scored a goal.

(Laughter).

But anyway, I had to quit.

Fortunately, I came across snowboarding.

After my first snowboarding experience,

I immediately bought my own snowboard

and went on a skiing holiday
together with my dad.

And this was amazing.

Four days, nothing but snowboarding.

And the best thing about snowboarding:

flying past all those big people

and leaving them wondering
how this little kid could be so good.

Then in two weeks,
I'm going on another skiing holiday.

And I'm really looking forward to it.

Then, at a reunion in Denmark,
I was introduced to go-karting.

The adrenaline that go-karting
gave me was amazing.

I even went racing with the dads,
and I got fifth out of eight.

Not too bad for a 15-year-old

who was only one meter
and 25 centimeters tall, right?

When I came home,

I immediately started go-karting
at a club in my neighborhood.

And they saw how much I enjoyed it

that they gave me my own cart
and my own suit.

But go-karting was just a step towards
an even bigger goal -

getting my driver's license.

So when I turned 17,
my father challenged me.

He said, "If you pass
your theoretical exam

before we leave on holiday,

we will pay for your car.

So the day before we went on holiday,

I went for my theoretical exam.

And guess what? I passed.

A year later,
on the day that I turned 18,

I couldn't wait,

I went for my practical exam.

And guess what? I passed again.

And yes, I got my car.

I've been driving
for almost two years now,

and it's amazing.

Not being dependent on anyone,

and I can go wherever I want,
whenever I want.

But apart from family, friends,
and taking up challenges,

there is one more thing
that brightens up my day.

And that's moments like this one.

Moments in which I can talk
about life with progeria.

By talking about my disease,

I want to make people aware
of its consequences.

As such, I hope I can make
a difference for my sister,

the other 142 progeria kids,
and the whole progeria community.

It's for these guys that I do it.

But also, I hope I can make
a difference for you.

We all have a bad day now and then,

and sometimes, life can be bluntly unfair.

But hey, with a nice family,

some great friends,
and some exciting challenges,

you can come a long way already.

So don't complain about the things
you're not capable of,

but show the world
what you are capable of.

Because life's too short.
Make the most of it.

Oh, and never forget
to take a smart phone with you,

so you can capture the beautiful moments.

Just like this one.

(Applause)