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

Summary

In this inspiring talk, 19-year-old Michiel Vandeweert shares his life with progeria, a rare aging disease. Despite physical challenges and societal stigma, he emphasizes the importance of positivity, family support, and embracing challenges like sports and driving. Michiel's story is a testament to resilience, urging everyone to focus on capabilities rather than limitations and to cherish life's moments.

Takeaways

• 🌟 Michiel Vandeweert is a 19-year-old diagnosed with progeria at the age of five, a rare aging disease caused by a mutation in the LMNA gene.
• 👶 Michiel was born normally but was noticed to have physical developmental issues a few months after birth.
• 🌐 There are only 144 children worldwide with progeria, with an average age of 12, emphasizing Michiel's unique position in the community.
• 😢 Michiel faced bullying in primary school, being called 'Alien' and told he would die young, which deeply affected him.
• 👧 The birth of Michiel's sister Emma brought relief to their parents, but she too was later diagnosed with progeria, adding a new layer of complexity to their family's experience.
• 🤗 Michiel's positive outlook on life is evident, as he encourages his mother not to be sad about Emma's diagnosis, highlighting the support and experiences they can share.
• 👨‍👩‍👧‍👦 The importance of family and friends is underscored as a primary source of strength and support for Michiel.
• 🏆 Michiel's resilience is demonstrated through his love for challenges, particularly in sports, where he found joy and a sense of achievement in snowboarding and go-karting.
• 🚗 Achieving his driver's license at 18 was a significant personal milestone for Michiel, symbolizing independence and overcoming physical limitations.
• 🗣️ Michiel uses his platform to raise awareness about progeria, aiming to make a difference for his sister, other affected children, and the progeria community.
• 💪 His message encourages others to focus on their capabilities rather than their limitations, and to seize every moment in life.

Q & A

What is progeria and what causes it?

Progeria is a rare aging disease characterized by a mutation in the LMNA gene, which leads to cellular malfunctions. This results in physical symptoms such as remaining small in stature and not growing hair.

How many children worldwide are estimated to have progeria and what is their average age?

Worldwide, there are only 144 children with progeria, and their average age is 12 years old.

What challenges did Michiel face in his early life due to progeria?

Michiel faced challenges such as being called 'Alien' in primary school and being told he would die at the age of 12, which caused him distress and sadness.

How did Michiel's family react when his sister Emma was also diagnosed with progeria?

Michiel's mother was deeply upset and cried when Emma was diagnosed with progeria. Michiel comforted her by focusing on the positive aspects of living with the disease.

What are the three main sources of strength that Michiel mentions in his speech?

The three main sources of strength for Michiel are his family and friends, challenges such as sports, and the moments when he can talk about life with progeria to raise awareness.

How did Michiel's parents help him accept his condition and live a positive life?

Michiel's parents raised him in a positive way, always encouraging him to experience as much as he could in his short life, which helped him accept his condition.

What sports did Michiel participate in and how did they contribute to his life?

Michiel played football but had to quit due to his physical limitations. He then found joy in snowboarding and go-karting, which gave him a sense of freedom and accomplishment.

What was the significance of Michiel getting his driver's license?

Getting his driver's license was significant for Michiel as it represented independence and the ability to go wherever he wanted, whenever he wanted, without being dependent on others.

How does Michiel view his role in raising awareness for progeria and the progeria community?

Michiel sees his role in raising awareness as a way to make a difference for his sister, the other 142 progeria kids, and the entire progeria community. He hopes to inspire others through his story.

What advice does Michiel give to others about dealing with life's challenges?

Michiel advises others not to complain about what they cannot do, but to show the world what they are capable of, emphasizing that life is too short and should be lived to the fullest.

What was the gift Michiel received from his friends after graduating from high school, and what did it mean to him?

Michiel received a book from his friends with a photo of him on the front and the title 'More than a Legend.' Inside were photos of fun activities they did together, reminding him of the importance of his friendships.

Outlines

00:00

🌟 Living with Progeria: Michiel's Story

Michiel Vandeweert, a 19-year-old diagnosed with progeria at the age of five, shares his life experiences with this rare aging disease caused by a mutation in the LMNA gene. Despite physical limitations and societal challenges, Michiel maintains a positive outlook, attributing his strength to his supportive family and friends. He recounts childhood memories, including the emotional revelation that his sister Emma also has progeria. Michiel emphasizes the importance of embracing life's challenges and shares his enthusiasm for sports, particularly snowboarding and go-karting, as a way to overcome his condition's constraints.

05:00

🏁 Overcoming Obstacles: Michiel's Journey to Independence

In the second paragraph, Michiel Vandeweert discusses his passion for challenges, especially in the realm of sports and personal growth. He talks about his transition from football to snowboarding and go-karting, highlighting his participation in a racing event and his eventual acquisition of his own go-kart. Michiel's determination is further demonstrated by his pursuit of a driver's license, which he earned at the age of 18, symbolizing independence and personal achievement. He also shares his mission to raise awareness about progeria, aiming to make a difference for his sister, the progeria community, and to inspire others to focus on their capabilities rather than their limitations.

Keywords

💡Progeria

Progeria is a rare genetic disorder characterized by the appearance of accelerated aging in children. It is caused by a mutation in the LMNA gene, which leads to cellular malfunctions. In the video, the speaker, Michiel Vandeweert, was diagnosed with progeria at the age of five, which affects his physical development and causes him to remain small and hairless. The theme of overcoming adversity and finding positivity in life despite this condition is central to the video's message.

💡LMNA gene

The LMNA gene is responsible for producing proteins that are crucial for the structural integrity of cells. A mutation in this gene is identified as the cause of progeria. In the script, it is mentioned that the mutation in the LMNA gene leads to Michiel's cells malfunctioning, which is a key factor in his condition and the challenges he faces.

💡Physical development

Physical development refers to the natural growth and maturation of the body. In the context of the video, Michiel's physical development is affected by progeria, causing him to remain small and not grow hair. This is a significant aspect of his life story and is integral to understanding his experiences and the challenges he has faced.

💡Bullying

Bullying is the act of using force, coercion, or threat to abuse, aggressively dominate, or intimidate others. In the script, Michiel recounts being called 'Alien' in primary school and a boy telling him he would die when he was 12, illustrating the emotional impact of bullying on his life and the resilience he has developed in response.

💡Sibling

A sibling is a brother or sister, and in the video, Michiel's sister Emma is mentioned. The revelation that Emma also has progeria adds a layer of complexity to Michiel's story, showing the genetic nature of the disease and the shared experience between the siblings.

💡Resilience

Resilience is the capacity to recover quickly from difficulties or to withstand adversity. Michiel demonstrates resilience in the face of his diagnosis and the challenges of living with progeria, maintaining a positive outlook and finding joy in life despite the difficulties.

💡Support system

A support system consists of friends, family, and other individuals who provide emotional, psychological, and sometimes material assistance. In the video, Michiel credits his family and friends as a source of strength and positivity, illustrating the importance of a strong support system in overcoming life's challenges.

💡Snowboarding

Snowboarding is a winter sport that involves descending a snow-covered slope on a flat board. Michiel discovered snowboarding as a way to engage in physical activity despite his condition, showcasing his determination to participate in life-affirming experiences and the joy he derives from it.

💡Go-karting

Go-karting is a recreational activity or sport involving the driving of a small four-wheeled vehicle called a go-kart. Michiel's involvement in go-karting represents his pursuit of thrilling experiences and the sense of accomplishment he gains from overcoming physical limitations.

💡Driver's license

A driver's license is an official document permitting a person to operate a motor vehicle on public roads. Michiel's achievement of obtaining his driver's license at 18 symbolizes independence and personal triumph over the limitations imposed by his condition.

💡Advocacy

Advocacy is the act of supporting a cause or policy, typically by arguing or lobbying for it. Michiel uses his platform to raise awareness about progeria, aiming to make a difference for others with the condition and to inspire those facing their own challenges.

💡Life's challenges

Life's challenges refer to the difficulties and obstacles one encounters in life. The video emphasizes the importance of facing these challenges with a positive attitude and using them as opportunities for growth and self-discovery, as exemplified by Michiel's own experiences.

Highlights

Michiel Vandeweert, 19, was diagnosed with progeria at age 5 due to a mutation in the LMNA gene.

Progeria causes cells to malfunction, resulting in small stature and lack of hair growth.

Michiel's parents noticed his physical development issues a few months after birth.

Only 144 children worldwide have progeria, with an average age of 12.

Michiel faced bullying in primary school, being called 'Alien' and told he would die at 12.

His mother explained his condition and its implications when he was 6.

Michiel's sister Emma was born healthy but later diagnosed with progeria at 2 weeks old.

Michiel's positive outlook helped his mother cope with Emma's diagnosis.

He focuses on the bright side of life despite his and his sister's disease.

Michiel's strength comes from his family, friends, and embracing challenges.

His parents raised him positively, encouraging him to experience life to the fullest.

Michiel's friends support him and gave him a meaningful graduation gift.

He enjoys sports like snowboarding and go-karting despite his physical limitations.

Michiel got his driver's license at 18 and enjoys the independence it brings.

He aims to raise awareness about progeria to make a difference for others with the condition.

Michiel encourages people to focus on their capabilities rather than limitations.

He advises making the most of life and capturing beautiful moments.

Transcripts

Transcriber: Rachel Lam Reviewer: David DeRuwe

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)