by Jerry Lewis
MDA National Chairman

Without question, it's a disorienting, traumatic development for a family when a child receives a diagnosis of Duchenne or Becker muscular dystrophy. Immediately, a thousand questions come to mind.

How will my son be affected in a few years? In 10 years? Beyond that? Is it my fault as a parent or as a person that my child has this disease? (Answer: No, please be assured that it isn't anyone's fault.) How can we start doing things now to make our son as healthy and happy as possible, for as long as possible?

You may also wonder: Are there any existing drugs that can alter the progression of the disease? How will my son's muscular dystrophy affect his education? Will he be able to go to a regular school? Will he be able to work, to get married?

Perhaps most important: What kind of research is being done to find a treatment, or a cure?

These questions, as well as ones about wheelchairs, braces, visits to doctors and hospitals, operations, insurance and other important matters are addressed at length in Journey of Love: A Parent's Guide to Duchenne Muscular Dystrophy. For those topics not covered in this volume due to limitations of space, you'll find throughout its pages and in our Resources section ideas and suggestions to help lead you to what you need to know.

All of us at the Muscular Dystrophy Association (MDA) know that there can be nothing more important to you as a parent than loving, supporting and encouraging your child so he can have a rewarding, happy life despite the difficulties imposed by muscular dystrophy.

Long ago, before MDA came into existence in 1950, and before scientists went on to find the genetic causes underlying Duchenne and Becker muscular dystrophies and other nerve-muscle disorders, families had to face muscular dystrophy without much understanding or reliable information, because the doctors themselves knew very little. Now, fortunately, that's not the case.

Today, our medical understanding of diseases such as the muscular dystrophies has increased dramatically, as has society's acceptance of people with disabilities. MDA has helped spread awareness and understanding about neuromuscular diseases over the years, helping to pave the way for historic legislation such as the Americans with Disabilities Act of 1990.

But even given these positive developments, we at MDA realize how hard it is to hear such words as "progressive disease" and "life-threatening respiratory distress" applied to a child whom you love. We know that the diagnosis of muscular dystrophy is a source of sadness for the whole family. In particular, it forces parents to re-evaluate and redefine -- but never abandon -- their hopes and dreams for their child.

There's a line from Shakespeare that says, "Courage mounteth with occasion." Even when things seem difficult or overwhelming, have faith that you'll find the strength you need to deal with the challenges posed by your son's disease. Those qualities of strength and courage are already within you, even if they haven't fully come to light.

Sometimes a major step toward discovering the inner strength you need is being able to ask for help from others. Chapter 9 of this guide discusses the many kinds of programs available through the government and local communities to help make your day-to-day struggle easier.

Throughout the guide you'll also see special sections titled "MDA Is Here to Help" about the various kinds of help that MDA makes available, from clinic services to summer camp to support groups and more. I urge you to take full advantage of the services MDA offers, including its many publications and its comprehensive Web site at www.mda.org, which includes more than 500 pages of useful, constantly updated information.

We'll also talk about the extraordinary scientific advances that increase our understanding of genes, of proper cell function in muscle, of what goes wrong in muscular dystrophy and ways in which it may become possible to alter disease progression.

So if you're feeling uncertain or fearful about your child's future, please take heart. Remember, there are a great many people who care, who stand ready to help you. MDA exists because it's dedicated to aiding families like yours. Indeed, millions of people who've never heard of you or your child have taken MDA's cause to their hearts, engaging in volunteer fund-raising activities or contributing pledges to MDA's annual Telethon.

What's more, there are MDA-funded scientists all over the world -- in England, Italy, Canada, Argentina and other countries as well as in laboratories throughout the United States, maybe even in your home city -- and all of them are working hard to find the answers we need to defeat neuromuscular diseases. Right now, a dedicated researcher who's making a pot of coffee or tucking his own child into bed could also be experiencing a flash of insight, a new glimmer of understanding that might be just what we need to propel us forward toward a cure.

Many other families have faced the challenge of living with muscular dystrophy, of helping their children to be the best, happiest and most fulfilled people they can be. You can do it, too. In facing that challenge with determination and a helping hand from those who care, you and your family will uncover reserves of strength, wisdom and courage you never knew you had.

Next... CHAPTER 1: What Is Duchenne MD?