Hi there! Someone may have already answered your question but I thought I would add my own two bits. I am 36 years old and I have DMD myself. Incidentally, I also have a wife, a job, and my own condominium.

When I was a young child like your son, I was well aware of the fact that I was somehow different than the other children. My mom hadn't told why I was different and this made me depressed. I thought to myself that my mom would have told me if there was something wrong with me so the only thing it could mean was that I wasn't trying hard enough or that I wasn't eating enough spinach (because that is what made Popeye strong).

I suspect that telling your son would actually be a relief to him. I'm not saying that you need to tell him that he probably won't live quite as long as other people (that can wait a few years) but you should give a name to it at least, that way he will know that he isn't doing anything wrong. I would tell him that he has muscular dystrophy, which means that his muscles didn’t come with the right instructions on how to stay strong.

You may feel an urge to try and make him stay happy all the time and fill his life with as many extraordinary experiences as possible (and that would be understandable), but you really don't have to. When I was a child I desperately wanted to be treated like all the other kids, no better no worse. I wanted to be disciplined when I did something wrong and rewarded when I did a good job at something. And I think I turned out well enough as a result!

On the flip side, I have seen what happens when people like me are kept in a bubble. They get passed through school by being guided down the easy route, and they are never given the gifts of responsibility and expectation. As a result, they didn't attend college or university, never have had a job, and haven't been in a romantic relationship.

Having a child with DMD never gets easier or harder, it just evolves as you both adapt to the changes and experiences that you will inevitably encounter. Things only become scary if you let them be that way. However, if you see them as challenges and opportunities along a fascinating and fulfilling journey, then that is also what life with DMD can be.

So when your child can no longer walk one day (which will happen regardless of whether he uses steroid medications or not), you can choose to see it as an opportunity rather than a tragedy. I know that I did. All of a sudden I could 'walk' to school with my friends, play outside at recess, go to the store by myself, and even play sports! Rather than confining me, my power wheelchair liberated me. It was one of the many highlights of my life so far.