Siblings With 'Benjamin Button' Disease Progeria Aspire To Become Oldest Survivors

Since only one out of eight million people suffer from the degenerative disease known as progeria or the “Benjamin Button” disease, a brother-sister duo in Belgium who both suffer from the disease is one of the rarest cases one may come across.

But Michiel, 20, and Amber Vandeweert, 12, of Diepenbeek, Belgium, who both suffer from progeria and recently opened up about it, try to lead their lives as normally as possible. Although they were aware of the fact that most people having their condition do not tend to live beyond 12 years of age and that they had already started experiencing issues with their bones, teeth and hair, their outlook toward life was incredibly positive.

The sibling’s parents Wim and Godelieve Vandeweert said they were shocked when their son got diagnosed with the rare disease at just eight months old. “Losing his hair, not getting teeth and not gaining any weight. It was a big shock for us,” Wim said, Mail Online reported.

He added that they had always planned to have a second child and could not imagine in their wildest dreams that Michiel’s sister would also be diagnosed with the same condition.

"But when Michiel was born, we questioned ourselves,” Wim said. “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.”

Due to progeria, their bodies were aging 10 times faster than other people but Michiel still loved to race on his GoKart and Amber was a keen dancer. One of the biggest reasons they manage to live normal lives was because the siblings knew they could lean on each other at the times of need.

"I would definitely say we're each other's best support. We both know what it's like, better than anyone," Michiel said. "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. Kids see that we're different. They start to make fun of you. But I always stood my ground and never backed away."

Amber said that attending school was not always easy in her condition but she manages. "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,” she said.

Michiel said the key to beating the prolonged stares that people sometimes give them was to stand their ground and not back down. Even though he stands at four feet and one inch, he has worked in the past as a DJ and learned how to drive. Both the siblings have a very supportive circle of friends who see them for their personalities and not the condition they suffer from.

"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,” Michiel said. “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!”

Amber added: “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."