Meet Bert Gooris, a 32-year-old from Belgium, living with Duchenne muscular dystrophy. This year, for World Duchenne Awareness Day (WDAD), he is one of our Duchenne Ambassadors. Over the next few weeks, Bert will be sharing his journey on breaking barriers in his personal life.

About Bert Gooris

“Hello, I’m Bert Gooris, a 32-year-old living with Duchenne muscular dystrophy in Leuven. Though I reside with my parents, I have my own space in the house, complete with a desk, room, and bathroom. I am a positive person and a dedicated family man. My 21-year-old sister also lives with us, and my older brother, who doesn’t have Duchenne, resides in Landen. It was a shock for me and my family to learn that my sister is a carrier of Duchenne muscular dystrophy, when she was 18 years old. Recently, I got a tattoo symbolizing the strong bond between me and my siblings. My parents have always supported my participation in various activities, like playing soccer and riding my bike. Although I faced bullying in school, I stood up for myself and continued my education smoothly, making some of the best memories during my college years.”

Daily Life with Duchenne

“Due to Duchenne, I had to readjust my ideas about what I wanted to become in the future. At home, when we talked about further studies, I wanted to attend culinary school to become a chef. However, it soon became clear that this would not be feasible in the long run due to the loss of function in my arm and leg. That’s why I decided to pursue something administrative because working with computers would remain possible for a longer time. Even in football, I had to admit that playing matches became too difficult, and eventually, I couldn’t participate in training sessions anymore, so I wouldn’t become a footballer.”

Duchenne Ambassador

“At school, I had to stand up for myself, explain that I had the disease, explain why I couldn’t run as fast, and why I was heavier than others. This made me a person who cannot tolerate injustice and will stand up for the weaker ones in society. As I grew older, I encountered more stories of injustice or shortcomings, and I became more aware that many people still don’t know about the disease despite the efforts made. That’s why I see it as my duty, as an adult living with Duchenne, to take on the role of ambassador now. I want to share my story with other individuals with Duchenne to encourage and support them. By doing so, I aim to create global awareness.”

Interpreting ‘Breaking Barriers’

“Well, it’s about time we dare to break those barriers and push for change. Change in inclusion, belonging, being informed about medication, assistive devices, the right to certain benefits, and the steps to follow during important milestones in life. It should be clear for everyone what rights they have and where to access relevant information. The time has come for people with disabilities to be fully accepted by society, and administrative processes for them should be significantly streamlined.”

Key Message

“It’s still a tough world for people with disabilities. We are just like any other individuals with the right to be fully included, 100%. We lead lives just like everyone else. If we collaborate and are truly heard, we can overcome many obstacles together.”

Future Plans

“In the future, everyone should be aware of these diseases. Efforts should be made to grant certain rights to people living with Duchenne and Becker, or any other conditions.”

We invite you to follow his journey by following him on social media.

Published by worldduchenne