OIFE has a team of two Webmasters. A while ago we interviewed Vern van den Boorn from the Netherlands. And today we had a chat with Kevin Vanantwerpen from Belgium about his background and motivation to become a volunteer for the OIFE.

My name is Kevin, and I live in Belgium together with my wife Elien, our two wonderful children, and a lively bunch of animals. I have Osteogenesis Imperfecta type 4, which was diagnosed shortly after my birth. My mother also has OI, so it’s always been part of my life. I didn’t have many fractures (not keeping fingers, ribs, … in mind). But when they happened, they were usually severe and often required surgery.

In my professional life, I work as a webmaster and IT consultant. Technology and creativity have always fascinated me — I love building things from scratch and seeing them come alive online. That combination of logic and creativity fits me perfectly. As a volunteer webmaster for OIFE, I’m happy to use my skills to support a community I care deeply about.

I got to know OIFE through ZOI, the Belgian OI organization. What I value most in the OI community is the sense of recognition and understanding — being surrounded by people who truly get what it means to live with OI, and who share both the challenges and the positive sides.

Outside of my OI work, I like to spend time being creative: drawing, painting, reading, and recently, playing piano again.

One of my proudest achievements has been returning to manual wheelchair floorball, a sport I had to stop ten years ago because of back problems (severe scoliosis). I had a scoliosis fusion for this matter. So being able to play again feels like a small but powerful victory.

Some of the happiest moments in my life were meeting my wife and the birth of our two healthy children. Both were conceived through PGD, allowing us to prevent passing on OI — something we are deeply grateful for.

For me, the most important task for national OI organizations is to build strong connections between hospitals, researchers, and patient groups — while keeping the human side visible. My message to others is simple: do what you love, even if it carries some risk. Don’t let OI define everything.