“Hockey is my life!”
Sam is a 14 year old, enthusiastic teenager from Zijtaart (Veghel), The Netherlands. He loves to watch football and is a great PSV Eindhoven supporter. He’s major passion though is playing hockey. He hasn’t got a real “once in a lifetime destination”, a place he would love to visit at some time. He realises but all too well how great a home he has.
If tomorrow, everything were possible…
…then I would just love to do something with football. I would love to play the greatest football stars in the world. I would put my own team together as I already do now when I play FIFA on the computer.
… A medicine against Duchenne Muscular Dystrophy, that would be my biggest dream!
How do your friends deal with Duchenne?
Here in the village, everybody just thinks I am perfectly normal, even if I am in a wheelchair. Everyone says hello. But I have to admit I notice people paying more attention to the outside.
People from school and hockey, they know the real Sam. They don’t pay attention to my wheelchair but to who I am, from the inside.
What is different for you compared to other kids of your age?
I don’t know really… My arms don’t reach out as high, but apart from that I am just like all the others. I do the same things. To be honest, I don’t really compare myself to others too much.
He feels so great he doesn’t really notices any difference. He doesn’t seem to realize that taking care of him just requires more effort compared to his brothers and sister. He has a very positive attitude. But if he goes to the skatepark, then other children know him because of his wheelchair, not because of who he really is. When it comes to wheelchair tricks, he’s a real pro and that is what others seem to like most.
How does your typical day or week look like?
After breakfast a taxi driver picks me up and takes me too school. After school, I just do my homework and I like to watch TV. I get a physiotherapy session once a week at school too. Then we exercise to keep my muscles supple and in good shape.
In case I cannot reach out far enough, there is always someone to help me. Sometimes I get help to pack my schoolbag, but most of the time I can just cope on my own. I try to help myself as much as I can. At school I mostly work on a laptop because writing can be pretty hard for me. It lets me do everything I want and if something doesn’t work, I just ask for assistance and they’ll arrange something to help me out.
What is the impact of Duchenne on your family?
I haven’t noticed a lot yet, really. It’s just part of our life.
It does have a major impact, but I am glad he doesn’t realize all that yet and that he doesn’t pay attention too much.
We rearranged part of our ground floor thinking of how Sam will evolve in the future. He has his own bathroom, sleeping room and living room, where he will be able to live independently in the future. There is even an option of installing his own kitchen if needed. There is some sort of zip line running through all the rooms that helps him to move around. It greatly enhances his mobility. After all, it’s getting harder to lift Sam up as he is getting bigger and heavier. We have installed a special device that helps him roll on his side in bed and the bed has adjuistable height as well. The bathroom is equipped with a lift that helps him in and out of the bath tub.
We were lucky to get financial support through our insurance. That’s how we managed to foresee 3 different wheelchairs for Sam: one for everyday activities, one to play hockey and a third one (the super fast model according to Sam) for his spare time. Sam is a pretty skilled wheel chair rider and people seem to admire him for that. But at the same time we are very aware that not everyone can afford the comfort and luxury as we do. Here in the western world, a discarded wheelchair can serve people who are less lucky to have the support and financial means we can rely on.
How well known is Duchenne?
Sam was almost 4 when he was diagnosed with Duchenne. The disease was new to us. We didn’t really know anything about it. Sure we heard of ‘Duchenne’ before sometime but apart from the name, we didn’t remember anything about it.
We now probably know the disease a lot better than most of the doctors, because we dug into it to learn as much as possible about it.
People around us generally know how to handle Sam, what he is capable of and what is too much for him. That is all I can expect from them. There’s so many different diseases and syndromes you cannot expect everyone to become an expert in all of them.
What more would you like to tell people?
I would like people to pass a few important values to their children. Like show them what impact it has when they play a game while someone is uncapable of playing along. Children should learn how to respect someones capabilities and that is something that needs to be stimulated by grown ups. Turn children into some sort of caregiver and tell them to think about others rather than to always look at their own situation. Everyone seems to have all he wishes for but tends to forget about someone elses needs.
We need to grow towards more openness towards one another, to more social behaviour…