NOTE TO READERS
Better medical treatments, therapeutic devices and promising research make the future for those with DMD look brighter every day. However, as of 1998, the prognosis for boys with this disorder is still quite serious.
Much of the material in Chapters 9 and 10 was written to help parents whose sons are in the later stages of DMD. Parents whose children are in earlier stages of Duchenne muscular dystrophy may prefer to skip all or parts of the next two chapters for now. The table of contents and the navigation to the left indicate topics covered.
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It's important to start building a system of support around your family as soon as possible after you receive a diagnosis of muscular dystrophy. Such a support system would naturally include friends, relatives, the people at MDA, religious and community-based programs, and other services and supports mentioned in this chapter. Check the Resources section for names and phone numbers of organizations and agencies designed to assist with specific needs that may arise, including those mentioned in this chapter.
The more supports you have the better, so you'll have something else to turn to if one support doesn't do the trick in a given situation. As your child's disease progresses, you'll want to modify and add to this system of supports.
You can take initial steps toward building this support system during conversations with the health care service coordinator at your local MDA office as well as your doctor and your MDA clinic staff. Ask if you can speak or meet with other families who have been coping with DMD. The ultimate experts when it comes to dealing with a child's disability are often not the doctors or other professionals, but other parents.
Just be sure you're prepared to meet the other family's son if he's farther along in the disease than yours is. This experience can be upsetting. On the other hand, knowledge of what's coming in the near future can be one of your most valuable tools for coping with DMD.
Another helpful resource is the National Information Center for Children & Youth with Disabilities, which also has information on government programs and laws that affect people with disabilities. Other families' experiences, when presented in a positive and caring way, can be enormously helpful in steering you toward effective sources of help, while warning you away from blind alleys.
If you seem to run up against a dead end while seeking a particular service, double check and ask around to see if anyone else knows a way to turn the bureaucratic turndown into a "yes."
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