I have new criteria for when my sons participate in DMD clinical trials
Quality of life plays a bigger role in my thought process
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As a caregiver to three sons living with Duchenne muscular dystrophy (DMD) and a mother to four other children, I have learned a lot over the years. Today, I want to use that knowledge and experience to give back to the community.
Being a part of the Duchenne community has been like a buoy to my family and me since my sons, Max, 20, Rowen, 17, and Charlie, 15, were diagnosed with DMD in 2010 and 2011, respectively.
In the early years, it helped me comprehend the new life that a DMD diagnosis brought to my family. As my sons have grown into young men, they have also helped me along the way — from encouraging me to use the Hoyer lift for their transfers, to talking me through their transition to college, and everything in between.
I try to give back. The good Midwesterner in me wants, of course, to give more than I receive, but I’m not sure that’ll ever happen. If I had to be a mom and caregiver to three children with a rare disease, I’m glad I landed in a community as generous and caring as the Duchenne community.
Giving back by sharing what I know
One way I give back is by sharing my experiences in this column. I’m also frequently asked to participate in online group meetings that review potential designs for future DMD clinical trials.
My sons have been in two clinical trials. From those experiences, I know what works well and what is more challenging. I also know what I would never do again, and what I would have loved to see in the trials my sons participated in.
During a recent meeting, I was asked what would deter me from participating in a trial that’s being proposed. In the past, I might have replied, “We would be willing to do anything that would change the outcome of this disease” — meaning, if it would keep my sons alive longer, we would do it. But this time, I surprised myself.
It wouldn’t have occurred to me previously to wonder how a commitment like this trial would affect the lives we were trying to save. When my sons were young, I didn’t have access to, and they didn’t qualify for, any trial that would’ve consumed their lives. At most, we traveled every six weeks for one.
But what if my sons had to travel more, miss lots of school, have no time to spend with friends or get involved in activities like band, vocal music, or theater? Would they have had the same quality of life, rich with friends and family, and access to the arts?
I don’t know the answer to that last question, but I do know what would keep me from wanting my sons to participate in a clinical trial. I would say no to travel and hospital/clinic visits that kept them from attending school regularly, travel that required our family to be split up consistently, and anything that interfered with the activities they participate in.
I realize that some of these things are bold. Being a mom and caregiver to older children and young men living with Duchenne allows me to be. I have a lot of experience. I know that my sons are living on borrowed time. I want them to be healthy and here with me, but more than that, I want them to have happy, full lives.
My answers to some questions have changed. I am willing to try new things in the hope of slowing their disease progression, but I also want to find a balance that allows my sons to enjoy the lives we are trying to save. I hope being able to think about these things might serve as some small contribution to other caregivers in the Duchenne community.
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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