If you are reading this, I'll bet that you personally know someone who has Duchenne Muscular Dystrophy. DMD is not like the British royal family, the kind of topic that everybody wants to know about.
I certainly didn't know anything about it until 1988, when my youngest son Benjamin, then age 3, was diagnosed. At that point, my interest suddenly became a lot keener. I soon found out that there was no single book to tell me what to expect. So I started gathering information wherever I could find it. What you read here is the result.
This is not an objective scientific treatise. I definitely have my biases:
2) I think that parents can make the biggest contribution to the well-being of children with DMD. Also, they are the only ones who can not turn away from the responsibility at the end of the day. That is why this is written from the parents' point of view.
3) I think that all of us have to learn to enjoy the present, and not stare ourselves blind on the future. So don't read these pages from beginning to end in one sitting. Rather, read as much as you need to know, or as much as you can stand to learn. The chapters are more or less in chronological order.
4) On the other hand, I think it is better to work toward maintainable solutions than to go from one temporary stopgap to the next. So if you are going to buy a house, a car, a computer, etc., you might as well look for one that you will be able to use five or ten years from now.
5) If you have the responsibility, you should also have the authority. I think that in the end, you and your child have to decide what is right for you. There is no "correct" way of dealing with DMD. Other people can give you information about what is possible, but they should respect and support you in the decisions you make.
One more thing. Throughout, I'll refer to people with DMD as males, and I'll follow the male pattern of progression. That is not a sexist bias, but the result of both ignorance and sloth.
Although the large majority of people with DMD are male, there are girls with DMD, also. I don't know enough about girls in general (being a guy without daughters), and about girls with DMD in particular, to know what problems and possibilities they encounter that are unique to their gender. I am quite willing to be educated in that respect.
Also, referring to guys only saves about as much work as drawing only three fingers on a cartoon character: not very much from day to day, but quite a lot overall. And I am in favor of saving work.
