You will hear DMD is incurable. That means we do not have something that will make it go away. Yet. More progress has been made in the last ten years than in the 100 years before that. We now know what causes DMD, and lots of work is being done to find a way to repair the very genetic code that lies at the root of it. There is reason for reserved optimism here.
DMD as of now may be incurable, but that does not mean we just have to sit and wait for the inevitable. DMD is treatable. Lots of things can be done to lessen or prevent the effects it can have, and we'll come to talk about that later.
You will hear that DMD is progressive. True enough. Your child's muscles will slowly get weaker all the time, so slowly, in fact, that you will not notice it from day to day. That means that you will have some time to prepare for what comes next, to grow into your new role.
You will hear that DMD is debilitating. Well, yes, when muscles get weaker, they will not be able to do what they used to. If you just leave it at that, that would be debilitating. But you don't have to leave it at that. There are alternative ways of doing just about anything.
You will hear that DMD is terminal, that it will take away your child before or in his early 20s. Without any intervention, that is probably true. With interventions, men with DMD can live active lives into their 40s, and that border gets pushed back all the time. (There is no guarantee here. But then, there is none for any other child, either.)
You will hear that the course of DMD is highly predictable. Medical people like to have clear and crisp prognoses. They admit that the timetable may be different for every child with DMD, but they insist every child will come to certain milestones sooner or later.
I hate to sound as if all the doctors are wrong and only I am right. But here I respectfully beg to differ. The more I talk with parents, the more I hear of kids with DMD that do not fit the predicted pattern. That is why you will see me use "may" a lot more than "will". It means you need to be on the lookout for what may happen, but you need not give up hope that it will not.
There is one piece of bad news that I can not make any less than it is. That is this: you and your child will no longer be ordinary. All the common things we assume when we dream of the future can no longer be taken for granted, and letting go of that can hurt.
Your child will lead an exceptional life. Will he be able to go to school? Sure, but maybe not in the same way as most other kids. Will he be able to be a Boy Scout? Possibly, but not in the same way as most other kids. Will he be able to dance at his high school prom? Will he be able to find a girl friend? Go to college? Find a job? All these things are definite possibilities, but to do them, extraordinary methods may need to be used.
You will be called upon to do exceptional things, and that looks overwhelming at first, especially if you look ahead further into the future. Remember though, that all you have to take care of now is today. Tomorrow will come by itself.
Will you be able to rise to the occasion? If you doubt that, go talk with some parents of older kids with DMD. You will be amazed at how matter-of-factly they'll talk about the things they do. It will make you wonder: how can they do all that without their hearts breaking every minute? How can they be so cavalier, callous even? They were not born veterans. They 'll tell you they started out just like you, dazed, confused and in turmoil. Over time, they grew into their roles, and chances are pretty good that you will, too.
