Hallo, I'm

Stephanie Freij

wheelchair-user, Coffee Lover & Intense Curiosity

I was young and I wanted something, but the body had other plans. The doctors have always said that there was something wrong with my muscles. A congenital muscle disease, but they have never been able to stick a label on it. Did you know there are more than 600 muscle diseases? Many of these muscular diseases are so rare that research has never been done.

Ik was jong en ik wilde wat, maar het lijf had andere plannen. De artsen hebben altijd al wel gezegd dat ik iets aan mijn spieren had. Een aangeboren spierziekte, maar ze hebben er nooit een etiketje op kunnen plakken. Wist u dat er meer dan 600 spierziekten zijn? Veel van deze spierziekten zijn zo zeldzaam dat er nog nooit onderzoek naar is gedaan. Ik heb dus een aangeboren zeldzame spierziekte en heb daarnaast Attention Deficit Disorder) ‘Mijn hoofd zit vol plannen. Ik denk alleen zo lang na over wat ik als eerste ga doen en waarom, dat er weinig uit mijn handen komt.’ Iemand met ADD heeft dagelijks last van concentratieproblemen. Hij of zij moet constant compenseren voor een wat tragere informatieverwerking (veel gedachten), het vertraagd verwerken van emoties, problemen om tot activiteit te komen, motivatieproblemen en bijvoorbeeld moeilijkheden met planning. Dat alles is echter geen probleem voor het hebben van een inspirerend of succesvol leven. Sterker nog, het helpt mij juist om creatief, innovatief en fantasierijk te zijn.

Fulltime Wheelchair User

Now, I am a fulltime wheelchair user, every single day is a bit like top-sport to me. For me, a simple movement is much more difficult than for healthy people. And still, I am happy and always find a way to do whatever I want. I see myself as a creator of universes, conveying stories and images. With my head filled with the great thinkers: Shakespeare, Lev Tolstoj, Michel de Montaigne, television series: Friends, Grey's Anatomy, Homeland and animators Pixar and Disney, I am creating my own world. When not plugging along on new projects or chasing around my mini humans, (niece and nephew) Isabella and Olivier, I can be found riding in my wheelchair or trying to keep my Beagle dog satisfied.

Life is a succession of lessons that must be lived to be understood. I have used the analogy that learning to live with a rare Muscle Disease is like trying to cross a stream without getting wet. The only way is by using the stepping stones provided (my chosen life's path). Each step is a life experience and I must come to terms with that experience (regain my balance) before being able to take the next step. It is a slow and often challenging journey, but I am finding it very fulfilling.


Cups Of Coffee


Finished Projects


Happy People




In my former career I had the privilige of working with great students as a teacher Social Studies. Thanks to my health issues my career ended straight away. But my mind was still hungry for knowledge. So that's why I'm self–taught and constantly learning. Just for fun! I've been exploring the world of art, writing, Illustrating and webdesign with my bare hands along the way as monuments to my friends and family. Limitations bring out the best in a situation, which is why I keep my collaborations in a nimble little set up. So people I have worked with are - by necessity - highly experienced, skilled, confident and innovative.