Even so, reading about chronically ill children has made me realize that there are some things that we will not have to cope with.
Our children are not permanently in a critical condition, or in pain all the time: we don't have to watch them suffer, or watch a monitor day and night, and be ready to do something drastic at a moment's notice. Our children are changing, but the changes are so slow and so predictable that we can accommodate to them and anticipate what may be coming next.
Our children are not contagious. They need not be shunned by protective parents, the way kids with AIDS often are. And DMD will not make them incontinent, another reason for children to become social outcasts. (Some kids are too stubborn to stop playing, and then find that they can't get to the bathroom fast enough, but that's a different story.)
Our children will lose a lot of the abilities they had before, and that is tough. But look at what they will keep: DMD will not make them go blind, or deaf, or without sensation. They will still be able to communicate, both with words and facial expression. There is a persistent hypothesis that a lot of children with DMD have "non-progressive mental retardation." They may have learning difficulties, but you will not have to stand by and watch their mind flicker and extinguish, the way some other parents must.
Also, as technology develops, a growing wardrobe of appliances is becoming available to compensate for diminishing physical abilities.
DMD does not occur more frequently in one part of the world than in any other. And (this really is dentist waiting room solace!), no two different types of muscular dystrophy have ever been found in one family.
Most importantly, DMD is not an orphan disease, one that is found too seldom to merit much research. In fact, DMD occurs more frequently than any other neuromuscular disease. Of every million live male births, 100 to 350 are boys with DMD. That means that you are not alone. There are a lot of people around you who at one time have gone through what you are experiencing, who know what it is like. And, based on old figures that do not reflect the rise in life expectancy, in a region with 100,000 people you can expect to find at least four families who currently have boys with DMD. MDA can put you in touch with those people.
The Muscular Dystrophy Association is a final piece of good news. MDA assertively focuses public attention on neuromuscular diseases, and aggressively pursues research for cures. That does not mean that MDA has no room for improvement, but things could be a lot worse.
