The Waiting Game Can Be Tough to Play

My family has had a hectic week. It started out lovely; the entire family, all nine of us, spent a beautiful, springlike day together at the zoo. By Sunday evening, however, we had kids with fevers, coughs, and runny noses. At last count, four of us have come down with influenza A. I started writing this column from the waiting room of the doctor’s office with the first of the symptomatic kids.

I smile knowingly because somewhere out there, a Duchenne mom or dad is reading this on their phone in a waiting room. I don’t know many things, but I know that parents of children with muscular dystrophy understand what it is to wait.

As a mom to many, I wait for lots of the same things as moms anywhere. I wait for the kids to fall asleep and eat their vegetables. I wait in the school pickup areas and outside of practices. Lord knows I wait an obscene amount of time for them to brush their teeth after asking them to do so for the umpteenth time. It seems that I am always waiting.

As a mom to three boys with Duchenne muscular dystrophy (DMD), however, I wait for so much more. My life as a DMD mom started with waiting as we tried to get a diagnosis for my oldest son, Max. Once we began to suspect he might have something like Duchenne, we waited for a referral to a physical therapist, then for a referral to a neurologist, and then finally for the results of genetic testing.

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I’m always waiting. I’m waiting in the doctor’s office, in line at the pharmacy, at the clinic, for insurance approvals, for test results. I’ve been waiting more than eight years for the U.S. Food and Drug Administration (FDA) to approve the trial drug Translarna (ataluren) that my three sons take. I try to make the most of the waiting, and sometimes I am superproductive. I talk with and form deeper relationships with my children, read, make grocery lists, schedule appointments, pray, order things online, and more.

I think my life as a mother and advocate has fallen into a rhythm of waiting. There is a balance between waiting for disease progression and waiting for a cure or a new treatment.

Max, 16, is ambulatory, but his progressive weakness has made it more difficult for him to stand up on his own from a seated position in recent months. He isn’t ready for that kind of loss, but he and I both know it’s coming, and we wait for it to take a permanent grip on his life. Simultaneously, we have not given up hope and are waiting for better treatment options to help stop further progression.

When my sons were first diagnosed with DMD, they were just little boys, and I felt that we had lots of time for a cure or better treatment to present itself. After a decade, they are no longer young boys, but rapidly becoming young men.

I realize I was naive in the beginning. I had no idea how long clinical trials and FDA approvals take. I had no idea how much they cost. Sometimes I wonder if I’m waiting for something that will not happen in time for my sons.

In the same decade, however, there have been positive changes. I remember being told at diagnosis that young men with Duchenne typically only lived into their 20s, but life expectancy has since increased. So I’m learning to celebrate how far things have come and to enjoy every minute of the wait.

Note: Muscular Dystrophy News 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 or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.