To celebrate Rare Disease Day, the pharmaceutical company Mereo Biopharma invited Ferre Castrel and Martijn Dillen from Belgium to its headquarters in London to talk about their lives with OI. OIFE Magazine reached out to them to learn about the experience.

Hi guys, thanks for doing this interview! Can you briefly introduce yourselves?

Ferre: “Hello! I’m Ferre, 19 years old, from Belgium. I live with my parents and older brother. I study electromechanics at Thomas More College.”
Martijn: “And I’m Martijn, also from Belgium.”

For Rare Disease Day, you traveled to London, where you spoke with employees from Mereo about your life with OI. Can you tell us about that experience?

Ferre: “It was my first time in London, and it was amazing. Mereo gave us a very warm welcome. Bruno from our national organization, ZOI, contacted me about an opportunity to go to London for an interview. At first, I was a bit sceptical because I’d have to skip school for a day, but in the end, I’m really glad I went.”

Martijn: “It was a really nice experience. I’m happy they invited us to share our stories about living with OI. They were specifically looking to speak with young people with OI, so we volunteered.”

What topics did you discuss with people from Mereo?x

Martijn: “We talked about several things; what it was like growing up with OI and the difficulties we’ve faced. The Mereo team reacted very positively and they were great listeners.“

Ferre: “Yes, we shared our diagnosis stories and what it was like playing with other children as a kid. The employees were very thankful that we came all that way to answer their questions.”

In general, what’s the most common misconception you hear about being a young person with OI?

Ferre: “That I just need to drink more milk, haha, I hear that a lot. But if I had to pick a more serious one, I’d say that people I just met often don’t know my limits. Most of the time, they underestimate me.”

Martijn: “I also think that the most common misconception is that people underestimate our abilities. I don’t think it’s necessarily about OI, it’s more about being young and using a wheelchair.”

Ferre, I know that at the London event, you talked about feeling pressured to attend a special school. Can you explain why that happened and how you and your family dealt with it?

Ferre: “Like I said, people often underestimate what I can do, and that was also the case when I was a baby. Doctors told my parents I wouldn’t even be able to sit up on my own. But now I can walk around.“

“When the time to choose a school came, it was clear I could attend a normal school. The only issue was finding a school willing to take in a child with brittle bones. I was lucky to find De Ceder as my elementary school. I had an amazing time there and learned to be independent. My parents and the school communicated closely and about any concerns, both before I started and while I was there.”

Martijn, you’re a medical student, and you mentioned that being a wheelchair user was a challenge when you were accepted. Can you tell us more about that?

Martijn: “I spoke with some professors before I enrolled. Some of them were concerned that it would be difficult for a person in a wheelchair to complete the program. But that didn’t hold me back, because I know my own capabilities.”

Martijn, how does your experience with OI and bone health positively contribute to your education?

Martijn: “I’ve spent a lot of time around doctors, so I’ve seen how consultations work from the patient’s perspective. Being in a wheelchair also helps me empathize more with patients”.

I know both of you participated in the OIFE Youth Event in Oslo. How was that experience, and what did you enjoy most about it?

Martijn: “The OIFE event in Oslo was a really nice experience. I met a lot of amazing new people, and we did so many fun activities together.”
Ferre: “It was a great a experience, and I made a lot of new contacts in the OIFE community. I especially enjoyed the nature and the sunsets.”

Are you going to the next youth event in Warsaw? What do you expect from it?

Ferre: “Yes, for sure. I expect it to be just as amazing as the weekend in Oslo.”
Martijn: “I think I’ll be going as well. I don’t expect it to be that different from last year, but it doesn’t need to be – it was such a fun experience.”

Dr. Nick Bishop from the UK was also present. Check out the video clips below and read more in this article.

Interview with Martijn and Ferre:

Interview with Prof. Nick Bishop:

This article was first published in OIFE Magazine 2-2025.