A diagnosis of Duchenne affects everyone close to the child: parents, siblings, grandparents, extended family members, and friends. Use our site to connect to news, advice, and other members of the Duchenne community.
It is not easy to enter the World of Duchenne.
You probably feel overwhelmed, lost, and alone. It’s been many years since my sons were diagnosed, and there are still days when it is difficult for me to see through the tears, and days when the anger is overwhelming. Why my son? What did they do to deserve this diagnosis? So many questions without answers.
None of us arrived here by choice. So how do we navigate this unknown territory when we haven’t even received a map?
How will we manage this journey into a new world?
In your new world, you will learn a foreign language—the language of Duchenne. It will include words you have never heard before, and you may stumble. But you will repeat them and repeat them until your new vocabulary becomes familiar.
You will become a partner in your child’s care. Your knowledge about his medical care, his needs, and his possibilities will expand. And you will find power in this new world. Perhaps it’s power and strength you never thought you had. The good news is we are in a new era of Duchenne—one where 27 companies are invested in finding treatments to stop or slow the progression of Duchenne. There is reason for real hope, hope that I never dreamed of when my boys were diagnosed.
Now that you’ve entered this new world, you might begin to notice that everything looks different. And it’s not just the world that’s changed. Your priorities have shifted. The word Duchenne accompanies your every waking moment, enters every conversation, changes every relationship.
You are indeed on a journey, and this journey will lead you to places you never considered going. It will lead you to people you never expected meeting. But some of those places are great, and many of those people are good, caring people. They will offer their hands to keep you steady and help guide your decisions as you explore the World of Duchenne.
At first, it may feel like the sun will never shine again in your world. But slowly, as you wake up each morning in this new world, you will put one foot in front of the other. However shakily, however uncertainly, you will regain some balance, and your strength will return.
Some people in your life may not understand your journey into the World of Duchenne. They may slowly drift away. Others will welcome your journey as their own. They will stay close and offer to help. Family, friends, doctors, nurses, and physical therapists will become partners and advocates—a vital support system. And, as in any new place, you will connect with these previously unknown people. They will come into your life and help in unexpected ways. These new friends will feel like family.
The World of Duchenne is a challenging and special place, full of frustration and surprise, obstacles and wonder, sadness and joy. In this new world, yes, you will find tears. But I can promise, too, that you will once again find your smile.
Parent Project Muscular Dystrophy
The first 3 months following the Duchenne diagnosis can be both devastating and overwhelming as you try and learn everything you can. We will do everything we can to guide your journey.