“You’re perfect just as you are!”

How difficult is it when your son asks why he has a muscle disease and he’s not like the others? Why did he get this disease, why can’t anybody fix it? There are so many things he would like to do but his muscles won’t let him. As parents, this affects you deeply, but we have no choice – we have to carry on. Not only for Teun, but also for his brother, whose life also suddenly changed.

It is very important to us that Teun learns that even with his muscle disease he is perfect just as he is and that together we will try to get as much out of life as possible.

This does not alter the fact that as his parents we feel incredibly powerless, especially when you know that no research is being done into this rare, progressive muscle disease. Research is not forthcoming from the medical or pharmaceutical world as there are so few children with Emery-Dreifuss Muscular Dystrophy (EDMD), so there is no money in it.

This is not an option for us as parents. Consequently, we decided to set up a foundation ourselves, through which we want to raise money to make research possible, so that, hopefully, our son and other children with this disease can have a brighter future.

Can we count on you?