“I am a design student. Arm function is most critical to me. If I can use my arms, I can draw and I can also direct my wheelchair. I would like to keep the same as I am or improve, as long as possible, protecting what is really so important – to continue participating in life and keeping my own privacy and independence.”

My mother saw that something was wrong. That’s why I was diagnosed early, at the age of 2. Despite pronounced muscles I was a late walker, I didn’t crawl and I broke my nose three times from falling. My family was shocked when they were informed that I will lose my strength and motor skills, even my ability to breathe. The most important thing for me is that my heart and lungs keep working the way they do, which is regularly monitored.

I get physiotherapy and take steroids – the only treatment that can slow the disease progression to a certain extent – but they have considerable side effects and don’t stop me from getting weaker.

At the age of 10 I lost the use of my legs and became wheelchair bound. I love my wheelchair as it is different from the big electronic power chairs, but it is important that I can move my whole arm to use it. The first time my mum took me to school in my wheelchair she was scared of the reaction of other kids. But when I entered school a famous Dutch actor asked me if I can already do a “wheelie”. When I entered my class room on my back wheels everybody was applauding. You see, life is good as long as you can use your arms. If you need help for everything, even for the most personal of needs such as toileting and feeding, you have no privacy anymore."