By Danny Baggott @Dan_Baggie

DESPITE there being only 155 known cases worldwide, a brother and sister BOTH live with progeria – an incredibly rare disease that makes them age too fast

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Videographer / director: Mert Beken
Producer: Danny Baggott, James Thorne 
Editor: Beth Angus

 

Siblings Michiel and Amber Vandeweert have progeria, a genetic condition characterised by the signs of accelerated, and premature, ageing.

Experiencing problems with their bones, teeth and hair growth, patients with progeria have a very short life expectancy with most not seeing out their teen years.

But that hasn’t stopped Michiel, 20, and Amber, 12, living their best life together - the inspirational siblings from Belgium have truly defied all odds up to this point and show no signs of slowing down.

Daredevil, Michiel, stands at just 4 foot 1 inch and loves to race around a track at Go Karting and snowboard with his friends. Amber, 3 foot 7 inches, has a great a passion for dancing and describes herself as playful.

When Michiel was born, doctors said it was verging on impossible for the Vandeweert family to give birth to a second child who also had the disease, and so when Amber was diagnosed eight years after her brother, everyone fell into a state of shock.

No one expected the siblings to be in this position, but they remain thankful to this day that they have each other as their greatest support.

Michiel told Barcroft TV: “I would definitely say we’re each other’s best support. We both know what it’s like, better than anyone.

“If Amber ever has a question, she can always come to me. It’s nice that I still get to be the big brother. Because if Amber didn’t have Progeria, she would be a lot bigger than me already.

“Progeria has affected our hair, bones and height – just like old people. They say the rate you can get progeria is one in eight million, so it’s extremely rare.

“They also say the life expectancy of someone with progeria is 12 years old, but we are taking medicines from America and hopefully, these should extend people’s lives by two years.

“Saying that, I’m now 20. So you know, that time has thankfully passed for me.”

In addition to the support they receive from each other on a daily basis, Michiel and Amber also have two loving parents, Wim and Godelieve.

Wim and Godelieve could never have anticipated having one child with such a rare disease, let alone two, especially after doctors had said how unlikely that situation would be.

Wim said: “The diagnosis was not when Michiel was born, it was actually around eight months after when we visited a children’s care centre and one of the doctors saw Michiel’s differences.

“When he turned five years old, he was changing. Losing his hair, not getting teeth and not gaining any weight. It was a big shock for us.

“We always thought about having two children. But when Michiel was born, we questioned ourselves.

“You can’t inherit it from your parents and so it’s very unlikely to have two children with progeria. We knew it had happened before, but with a twin from the same cell. Not two children with eight years difference.

“So when Amber was born, I asked for doctors to run tests just in case. And seven weeks later we found out that Amber had the condition too.

“The first few days were very hard, but we had a great support system around us to help us through that time.”

Michiel and Amber’s school life wasn’t always easy, with other children often staring at them and asking why they were so different.

Michiel said: “It wasn’t easy, no. Especially in primary school.

“Kids see that we’re different. They start to make fun out of you. But I always stood my ground and never backed away.”

Amber added: “Last year I had some difficulties in school – I said I wanted to be like a normal person and people bullied me because of that.

“Thankfully, that issue has been resolved now and school is going really well for me at the moment. They take good care of me.”

The siblings also receive stares when out in public, but thanks to a great friendship group, they have learnt to accept that part of their life.

“When they stare, that’s okay when they just look and go forward,” Michiel said.

“But sometimes they just keep looking, that’s when it’s annoying. There’s a big difference between the two.

“We both have very big friendship groups and they really help us deal with that. We can always count on our friends.

“They look through the disease. They don’t see the progeria part of us. They see us and our personalities.”

Amber said: “They help me when I am not feeling good, they make me feel happy again.”

Michiel and Amber love to go bowling with their friends and try to take part in as many ‘normal’ activities as possible - Michiel can drive a car and used to DJ in his spare time.

And one of their close friends, Ruben Gysemberg, has been with the siblings every step of the way.

Ruben said: “In the beginning, it was quite weird. But then I got to know both Michiel and Amber – we have always treated them like everyone else.

“They both handle everything so well. They have learnt to live with it.

“We now have a really good understanding of their condition too. Because as friends, we talk about it a lot. When they are not feeling well, we notice this. So yeah it’s really nice how close we have become.”

Michiel also wants to raise as much awareness as possible online – educating people about progeria and helping others who live with the disease.

Through his wise words, he has now gained thousands of followers on Facebook and Instagram.

Michiel and Amber have both experienced the ups and downs that come with having such a rare condition – but they have always remained positive about their situation and live for the moment.

Amber said: “I think we can both say we are very proud.

“You just have to be the person you want to be and embrace yourself no matter what.”

Michiel added: “We just try to live for the moment, but we definitely both have more things we want to strive for.

“I am very proud to have made it to 20 years old. I think the oldest child ever with Progeria was 26 – so now, I’m going to try and beat that!”