What is Duchenne?

Action 4 Ashton > What is Duchenne?

Perhaps you know or have known someone with muscular dystrophy, sometimes just called md? But chances are much more likely that you have no idea what muscular dystrophy exactly is or that there are many different types of muscular dystrophy that vary in severity from mild to severe and that the age of noticeable symptoms ranges from infant to adult.

On April 4, 2011 I received an unexpected phone call and was told that Ashton most likely had Duchenne muscular dystrophy. I had never heard of Duchenne before and it is very disconcerting to hear that your child has an unfamiliar illness! So of course I’m asking “You think he has what?”; “How do you spell that?”; “What does this mean?”.

The phone call was from a Physiatrist so I was told that my questions would be answered at an appointment with a Neurologist. Um, right, like a mom is just going to patiently wait to find out about some mystery disease her child has. So I looked up Duchenne and was absolutely horrified. I won’t go into all the details of that on this page, you can read more about that here.

But since this page is titled ‘What is Duchenne?’ you probably are looking for an answer lol. There really is no pretty way to put it. Simply stated, Duchenne is a genetic fatal progressive muscle wasting condition that to date still has no treatment or cure. Not only is that a mouthful, it is really hard to take in. So I encourage you to look at the other pages on the menu under ‘What is Duchenne?’ where I share child friendly photos, graphics and an animation even that makes it easier to understand what having Duchenne means for Ashton.

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