Siblings who are 'ageing 10 times faster' want to be longest living sufferers of rare genetic disorder

12-year-old Amber and 20-year-old Michiel Vandeweert both suffer from progeria, a disease that is believed to affect one in eight million people around the world


                            Siblings who are 'ageing 10 times faster' want to be longest living sufferers of rare genetic disorder

In the town of Diepenbeek, Belgium live a brother and a sister who are both battling a rare disease called progeria, popularly known as Benjamin Button disease. 20-year-old Michiel and 12-year-old Amber Vandeweert suffer from a rare genetic disorder which causes the human body to age 8 to 10 times faster than normal. The disorder is believed to affect only one person in eight million around the world and the Belgian siblings make up 2 of the 155 cases that are known to be alive right now.

Most of the patients who suffer from this condition die by the time they are 12 years old. The European siblings are already experiencing the problems associated with the disease and they have issues with their bones, teeth, and hair. The pair, however, has shown no sign of slowing down as the older brother Michiel loves racing around on his GoKart and Amber enjoys being a dancer.

The pair have set the goal of being the longest living progeria sufferers in the world with the record currently being held at 26-years-old. Michiel stands at just 4ft 1inch tall. He told Barcroft TV: "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."

He continued: "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."

Parents Wim and Godelieve Vandeweert took their son to a children's care center when the doctors there noticed that something was different about the child. Wim speaks of the time he heard his son's diagnosis: "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."

The parents were eager to grow their family some more and they were told that the chances of having a second child with the same condition was impossible. Wim continued: "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."



 

The siblings have said that even though they have to go through cruel stares and comments from bullies in the school, the siblings are always standing by each other. Michiel said: "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."

Even though they try to live without the disease holding them back in any way, the siblings have not always had an easy go at life. Michiel said: "Kids see that we're different. They start to make fun of you. But I always stood my ground and never backed away."

12-year-old Amber, who is only 3ft 7inches tall, said: "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 has been resolved now and school is going really well for me at the moment. They take good care of me."

The siblings are more often than not stared at when in public but they accept it for what it is and move on. Michiel said: "When they stare, that's okay when they just look and go forward. But sometimes they just keep looking, that's when it's annoying. There's a big difference between the two."

The pair also have a large group of friends who support them. The older brother said: "They look through the disease. They don't see the progeria part of us. They see us and our personalities."



 

Ruben Gysemberg, one of their close friends, has been with the pair every step of the way. He 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."

The siblings regularly go bowling with their friends. Michiel can also drive and is a DJ in his free time. 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, who hopes he can live to be 30, 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!"