Milan and Ilya 10 years and identical twins. At first glance there is nothing strange about them. But they both have the incurable muscle disease Duchenne. "When we heard that, it was such a huge shock. I'm still not over it," their mother Esther tells Edition GB.
Duchenne muscular dystrophy is a rare muscle disease, which occurs mostly among boys and men. In the Netherlands, 600 patients with the disease, which are not expected to be over the age of 30-35 years. It is difficult, even for Esther. "The fact that they will not be old hurts a lot."
"I try not to look too much into the future. We know, of course, largely already know how the boys will deteriorate in the coming years," says Esther. The diagnosis has Esther life and completely changed her husband. "From one day to another you live with a black cloud over your head."
Dream
What they both find difficult is what they have to share with Milan and Ilya. "They are still young, I want them to tell much about the prospects for their future," says Esther. "They should also keep their dreams." For example, the boys do not know what is expected for their longevity.
"They have a lot of questions, which is increasing. They know how their disease is called and why they may be less than their friends." Since both guys handle it very differently."They are also very different. Milan is an achiever, he's busier and wants to be like all the other boys his age. Ilya is more of a dreamer, he is also more accepted his illness."
Support and vent
It is obviously awfully distressing that the boys are both ill. According to Esther they also support each other. "They can make a lot of fun and are not alone in it." But there are also negative sides. "They are exactly the same age. It is very challenging as the one deteriorates sooner than the other. We notice already that he can Ilya less."
Also a negative side: "Milan is immense fear of being ridiculed from that fear to be less than contemporaries he Ilya sometimes laugh like that for example chokes That's very into, for me as a mother..," Says Esther. "It is on the one hand part of Milans process, but on the other hand, he should absolutely not take it out on Ilya."
More attention
It is difficult, says Esther. "It is so important that awareness comes to this terrible disease."
Today is World Duchenne Awareness Day. This year in the sign of early diagnosis. Which is often only identified as children older than four. Which can otherwise be possible in the future: the earlier the diagnosis, the sooner you can start treatment.
By Editorial Edition NL Photo: Screenshot YouTube
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