“Participating is more important than winning”
Adrian is a 7 year old boy from Jerez, Spain. He likes tinkering, likes being creative with his hands and is ever so fond of playing with his mum. The world is his passion and he is impressed by the fact that I speak more than one language. He also dreams of mastering many languages when he’ll be a grown up. He is the kind of boy that shows a lot of affection. Adrian still doesn’t know he has muscular dystrophy. His parents think he is still too young for the truth and he hasn’t started asking questions yet.
How did you discover something wasn’t quite right with Adrian?
My brother passed away when he was 38. He suffered Becker’s disease and another illness on top of that was just too much for his body. At the age of 2, Adrian was diagnosed with a genetic disorder during a blood examination. We and our family were shocked because it brought back so many memories.
What is different in Adrians world, compared to his peers?
Adrians coordination is a bit worse. He has less feel for balance and staggers at times. When he needs to walk longer distances, his legs hurt and he starts tiptoeing. He also has less power in his legs compared to kids of the same age. He does notice being slower than his friends but so far, he hasn’t started asking questions about it yet. He’s just happy that he can play along and have fun. He always needs some sort of support for his feet so we got him a special stool for the car. In school, the benches have a standard foot support so that works out just fine.
Apart from that, Adrian is just a regular, happy and active child. A real boy who likes to horse around every now and then.
How does a typical day or week look like for Adrian?
It is very important for Adrian to stretch his muscles regularly.That’s why we take him to the swimming pool twice a week, where he gets a specific muscle and respiratory training. He also visits a physiotherapist once a week. For Adrian, this is just like sports, to become strong and healthy.
How would you describe the impact of Duchenne on your family?
It isn’t always easy to deal with the situation, that’s for sure. We try our best to remain positive and not to show that deep inside we are unhappy. The memory of my brother obviously has an important impact on how we get through this as a family. But we’re lucky that people around us, family, friends, colleagues, teachers, take good care of us. Everyone deals with it in a rather positive way. We praise ourselves lucky to be surrounded by such fantastic people.
We are very aware of the fact that we should stand strong as a couple. Unfortunately, in many cases Duchenne leads to divorces because people cannot stand the constant pressure you have to deal with. We are convinced that together we stand stronger and we won’t stop fighting together, for Adrian.
Adrian doesn’t know he has Duchenne but still you are very active in the Duchenne community. You organize a lot of activities to raise funds for scientific research. How do you sell that story then?
Adrian has a very positive attitude and hence doesn’t ask too many questions about why we do such activities. He just wants to enjoy them as much as possible: participating in activities, interacting with people, having fun. That’s what he likes. We know that little by little, he will notice that he is less agile than his friends and that questions will arise. But we are prepared to deal with that in the most positive way possible. That Adrian keeps enjoying life is our biggest wish.
How (un)well known is ‘Duchenne’?
There’s still few people that know about the disease. If we were to ask people here (in the big shopping mall where we meet) if they know about Duchenne, I think there would be very few positive answers. If we were to show our T-shirts of Duchenne Parent Project, people wouldn’t know what they mean.
What more would you like to say to people?
I think people need to change their attitude!
Children that have a disease also can achieve things. They too can have goals in their lives and shouldn’t be written off because of their disease. Treat them just like any other child, dare to look ahead for them, dare to make plans. A sick child doesn’t necessarily mean an unhappy child, just because it is somewhat ‘different’. People seem to change their behavior towards others from the moment they know that person is ill. It is very important that we need to learn how to deal with that!