How my sons’ DMD progression has changed my outlook
I find myself feeling less hopeful, but I haven't given up
In the past 12 months, our oldest daughter got married, our oldest son moved across town into a college dorm, another son started his final year of high school, and, most significantly, I returned to full-time work outside the home. Life is drastically different for our family than it was a year ago.
The changes have prompted some deep reflection, particularly about my family’s journey with Duchenne muscular dystrophy (DMD). My husband and I have seven children: Lexi, 23, Max, 19, Chance, 17, Rowen, 15, Charlie, 14, Mary, 10, and Callie, 2. Max, Rowen, and Charlie all live with DMD.
I am realizing that my sons are now in the older category of those living with DMD. They were diagnosed in 2010 and 2011 when they were babies and toddlers. Now, they are young men. Max is a freshman in college, Rowen is a sophomore in high school, and Charlie is in his last year of middle school.
Watching my sons experience DMD progression
When we started our journey with DMD, there was a lot of hope and excitement for our boys’ future. There were clinical drug trials, the first of their kind for Duchenne, and there was more research than ever before, thanks to successful fundraising efforts. I was hopeful that my sons might never experience DMD disease progression.
It wasn’t just me, either. Parents of boys with Duchenne all around me shared in the excitement, many of them going above and beyond to help find a cure.
All of those good things are still happening, but they didn’t happen fast enough to prevent DMD progression in my sons. Max and Rowen are no longer ambulatory, and Charlie is slowly losing his ability to walk.
Although Max could stand and transfer until he was 17, he no longer does either, and his upper body strength is slowly diminishing. Rowen stopped walking when he was 11, and although he could help with transfers and stand for short periods, he recently lost that ability. His upper body strength is also diminishing.
Charlie is still ambulatory. With the right combination of drug therapies, I think we could preserve that, but it’s a race against time.
There are days I feel deflated, but I have not given up. I want a cure as badly today as I did in 2010. However, my sons’ ages and abilities make participating in the process more difficult. We are in a clinical trial now, and I am grateful because our options were minimal.
It mostly feels like I’m waiting for something amazing to happen. But as I wait, Duchenne continues to weaken and debilitate my sons. I’m not as excited and hopeful as I once was. No matter what excellent therapies are coming down the pipeline, they won’t reverse what Duchenne has already done to my sons.
All we can do is try to prevent further DMD progression and preserve quality of life. It’s not a bitter pill, per se, but it’s still not easy to swallow. I grieve all my sons have lost. Their muscles continue to deteriorate, and my heart breaks a little more every time I watch them suffer at the hands of DMD.
However, the work they’ve done since they were young matters. They were always willing to participate in research and trials, freely giving their blood and tears. They have been active in the pursuit of a cure.
My sons have three sisters; we know that someday I could have a grandson or they could have a nephew born with Duchenne. We recently discovered that my oldest daughter, Lexi, is not a carrier, but Mary or Callie could be.
My sons’ pursuit of a cure may not save them — I pray it will — but if not, it will be their sacrifices that help save their nephews, and if not a nephew, then the next generation of children born with DMD.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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haixin
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