Diagnosis of Duchenne Muscular Dystrophy | 8 things I wish I had known

My eldest son Max was diagnosed with Duchenne Muscular Dystrophy (DMD) on July 10, 2010. Over the next year my sons Rowen and Charlie were also diagnosed with DMD.

In a few days it will be the 12th anniversary of Max’s diagnosis. But for me, July 10th serves as the anniversary of diagnosis for my three boys with DMD, because at that time we realized there was a chance that our youngest sons would be affected as well.

For many years I have treated this day as the anniversary of a death. I cried everything from what I thought life would be like for my children, to the hard things they had to go through.

I spent the day angry because I could only imagine a future where they would lose the ability to walk and not have a healthy heart or strong lungs. I couldn’t think of how much more they could accomplish. Not because I didn’t believe in my sons, but because I was afraid to dream of something Duchenne might not allow.

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In recent years, however, the day has passed without much thought. The first year it happened, I was surprised. But then I realized that the growth had taken place. I had begun to intentionally focus on the joy around me, preaching that when I added up all the little joys I experienced, the sum was greater than Duchenne.

I wanted to be more grateful and I didn’t want Duchenne to be the worst thing that had ever happened to me.

When I intentionally started focusing on the good, it wasn’t because I wanted to change my response on the anniversary of the diagnosis. Yet it happened, and I’m so happy about it.

Along the way, I began to notice all the good Duchenne had brought to our lives. So today I want to share some things I know now that I wish I had told myself 12 years ago when I was struggling to see anything other than the challenges in front of my sons and me.

The boys will always have a good life. They will be boys. They will find the things they love to do, and they will do them well. They will encounter challenges, but they will have many more good days than bad. And all the while they’ll be telling fart jokes and talking about poo, until they’re teenagers and get even hotter! You will always be a #BoyMom.

It’s not your fault. Yes, you are a Duchenne carrier, but you didn’t know it. If you had to do it over again, you would still choose your boys because they are your boys! These are precisely the children God always knew they would be. That’s what you prayed for.

Don’t be afraid to dream. Max likes the theater. He performed on Nebraska’s most famous stage. He knows what he wants to be when he grows up, and you plan to go to college. It is good. Rowen is so bright and loves streaming. You’ll work to get him involved in a high school broadcasting program, and a career is possible. Charlie is sweet and kind, and I don’t know what he will be yet, but sweet and kind is a good place to start.

You have supportive friends and family. They will be with you every step of the way and make sure the boys have everything they need. You’re not alone.

The Duchenne community is fantastic. Don’t wait three years to log in. They are your tribe and will help you on this journey more than they ever know.

Get a swimming pool. The boys love the water and will stay in the pool long after they stop walking on land. Swimming is a perfect family activity and provides them with summers filled with memories.

Your family isn’t done growing yet. Don’t mourn the fact that you don’t think you will have more children.

There will be adventures. Go on them. Be creative. Find a way. Create memories. Please don’t say no because it’s not accessible. Say yes because you can.

This list is not exhaustive. Duchenne is different for every family. There are difficult days and difficult obstacles. Take the time to feel them, mourn them and process them. But I believe every Duchenne family can have peace and joy and live a full life.


To note: Muscular Dystrophy News is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues relating to muscular dystrophy.