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.