What we can say is what those people with DMD who live the longest and most fulfilled lives did. We'll get into more detail later, but here is a general time table for successful living with DMD:
After your child is diagnosed, he does his physical therapy as much as he can stand it. Sometime between age 8 and age 12 he has to give up walking, and gets an electric wheelchair.
After that, he keeps an eye on his backbone: if it starts to curve too much too fast, he gets an operation to stabilize his backbone from the inside. This often happens between ages 12 and 16.
He has annual heart checkups (EKGs and echocardiograms), so that potential problems can be diagnosed in time, and be treated with medication.
He also keeps an eye on his air intake: if he breathes too shallowly during part of the day or night, he gets assistance during that time from an assortment of pumps and breathing masks. Before that doesn't suffice anymore, often between ages 16 and 20, he has an operation to make an opening in his breathing tube, which can be connected to a breathing machine.
After that, barring accidents and complications, he lives as happily ever after as anybody else. Which means, in the real world, that he has to face many challenges and disappointments. But that's life.
