Duchenne Muscular Dystrophy is a disease that affects every 1 in 3500 boys. These boys are born with the disease and the worst part is that it is a disease that sneaks up on you, because although it may not seem as bad as it is at first, it keeps getting worse. Duchenne is a muscle disease and this is a simple description. At aroung 2 years of age boys have trouble getting up off the floor, cannot walk yet and can't crawl either. Instead they sit on the floor and puch themselves forward. This is due to the fact that their legs aren't strong enough. They eventually do learn to walk, this is aroung 3-4 years of age, but they do not walk like 'normal' children. They waddle and their backs become 'hollow', and they walk with their stomachs out. They also walk on their toes. They walk in this manner, because otherwise they simply cannot. Because of the fact that their leg muscles are so weak they can't balance properly which is why they walk like this.

When these boys are around 8-10 years old, they end up in a wheelchair, because their leg muscles are simply too weak for them to walk at all. But not only the muslces of their lower bodies are affected by this cruel disease. At around 13 years of age, their upper bodies, inlcuding their arms get weaker. This means that it is almost impossible for them to do things alone. Most boys need a robot arm to even do something so simple as brushing their teeth.

When Duchenne boys are around 20 years old, they need breathing equipment, because 1. the heart is also muscle and also gets weaker and 2. the muscles you need to breath (chest muscles) also get weaker and you basically cannot beathe without help anymore. Most boys with Duchenne pass away in their 20s.

But what about medication? Most boys start taking Prednison (a steroid) when they are aroung 6-7 years old. This basically slows down the muscles from getting weaker but it is NO CURE. Luckily there have been breakthroughs in research since Duchenne was discovered in 1986, but there is still no cure! What do scientist need to develop a cure with which these boys can actually be treated? Money, because money enable scientists to get more proper equipment, emply more people to do tests and to finance more clinical trials.

So what can you do to make sure that boys born with this disease have a chance to at least live a life that is not only longer but also healthier and happier? DONATE! Even one euro per person makes a HUGE difference.

Here are some videos in which you can see boys with Duchenne and their parents and how they cope with their disease.


Rahat Fateh Ali Khan
2 juli 2011 [Den Haag]
3 juli 2011 [Rotterdam]
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