When my husband, Terry, and I learned that our son Mike, then age 4, had Duchenne muscular dystrophy, we were devastated. Immediately, our hopes and dreams for Mike — playing sports, graduating high school, having girlfriends — all changed. That was 20 years ago.
I spent the next six months in chronic sorrow, but one day I woke up and knew we would be OK. We became involved with MDA and with other parents of children with DMD. Since then we’ve learned a great deal, much of it very hopeful. We have educated ourselves on being proactive with Mike’s care. Finding balance with siblings was sometimes difficult. Today, we’ve found inner peace with challenges facing us, and enjoy a full, rewarding family life.
It’s easy to become overwhelmed by your child’s diagnosis. But Terry and I assure you that you can cope with the emotional and physical tasks that lie ahead, if you take small steps, prioritize and listen to the needs of your family. Along the journey, you may sometimes be afraid, but your child will teach you many things, and you will learn to empower each other.
You may find others trying to set limits for your child. When Mike’s pediatrician asked about his participation in sports and my reply was negative, she asked why he didn’t play. Unknowingly, I had set limits on my son! Had it not been for that doctor, we would not have witnessed Mike’s love of baseball, which he played for three years.
We’ve been greatly helped by the information we’ve received from MDA and other families. These pages present an introduction to Duchenne MD designed to help you meet your child’s needs today and understand some of the changes to come.
From the information in this section, you’ll learn several encouraging things about muscular dystrophy: that your child’s diagnosis is not your “fault”… that DMD progresses over many years, giving your family time to adjust to changes…and that better treatments are constantly being developed for every aspect of the disease.
Society today is far more open to people with disabilities, and the law entitles your child to a full and inclusive education, employment opportunities and access to public places. Plus, there’s a whole world of technological devices to help your child do schoolwork, play and work. Currently, Mike is a student at college. Agencies such as our state vocational rehabilitation department have helped with access and provided him with voice-activated software. Not that long ago, isolation was an issue for disabled adults, but the Internet has changed all of that.
Surround yourself with inspirational and positive people. You will meet some amazing people along the way. Let your love for your child give you strength. Never give up your hopes and dreams. When our son graduated from high school, he had a girlfriend and was accepted by his peers. Today, he is comfortable in his own skin. He’s taught me more than I’ve taught him.
Through MDA, you’ll build a network of support. MDA’s Quest magazine is filled with articles ranging from emergency room protocol, school issues, durable medical equipment and tips on buying a handicap van, as well as the latest research news. At your local MDA clinic, expert doctors and health professionals will answer questions and make referrals to other specialists. At your MDA support group, you’ll make friends and find understanding. And at MDA summer camp, your child will find a place to be independent, grow emotionally and have the time of his life.
Life will be about acceptance. After you get past your initial fear and devastation, you’ll find that life still holds many joys for your family. Twenty years have passed since the day of diagnosis. Our lives are full of laughter and adventure.
As you face the coming years, remember MDA and all its resources are there to help. May you have all the strength, hope and support you need. You are not alone.