A brother and sister from Diepenbeek, Belgium have sadly found themselves battling the incredibly rare “Benjamin Button disease” that affects one in eight million people around the world.
Michiel, 20, and Amber Vandeweert, 12, both suffer from genetic condition progeria, a disease that causes them to age eight to ten times faster than the normal rate. The siblings make up two of only 155 known cases in the entire world.
Most people who are afflicted with the disease die by the time they are 12, and Michiel and Amber are both already experiencing problems with their bones, teeth and hair. Each of them are aiming to set the goal of being the longest living progeria sufferers ever, with the current record being 26 years of age.
“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,” said Michiel, who is just four feet one inch tall. “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 was diagnosed when he was just eight months old.
“When he turned five years old, he was changing,” said Wim, his father. “Losing his hair, not getting teeth and not gaining any weight. It was a big shock for us.”
Wim and his wife Godelieve had wanted to expand their family, but after Michiel’s diagnosis, they thought twice about doing so.
“We always thought about having two children. But when Michiel was born, we questioned ourselves,” Wim explained. “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.”
When Amber was born, the Vandeweerts asked doctors to run tests on her just to be safe. They were devastated when they were told that she too had the disease when she was just 7 weeks old.
“The first few days were very hard, but we had a great support system around us to help us through that time,” Wim said.
Though life is hard for them, Michiel and Amber are always there for each other.
“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.”
“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,” added Amber, who is 3 feet 7 inches tall. “Thankfully, that has been resolved now and school is going really well for me at the moment. They take good care of me.”
Michiel, who is aiming to make it to age 30, said that he and Amber just want to enjoy life as much as they can.
“We just try to live for the moment but we definitely both have more things we want to strive for,” he concluded. “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!”
