I can only imagine how my parents felt when they took me to the doctor at three-and-a-half years old and heard the words, ”Your son has Duchenne muscular dystrophy (DMD).”
It was 2004, and my mother noticed something wasn’t right. I had trouble getting up and down from the floor, I walked on my toes, I fell over a lot and I struggled with pedalling and balancing on my feet. I also couldn’t pronounce certain letters like A and F.
For a year, I was brought to various doctors across Ireland. For that year, my parents were told, “He is lazy,” or, as I am a twin to my sister, “He is letting his twin do all the work.”
It wasn’t until a very stressful few months in 2005 that a doctor did a test to check my CK levels. A person who does not have Duchenne usually has less than 200 units, but my measurements were much higher. When the results came back, my parents were called into the hospital and told the news no parent wants to hear: that their son has DMD.
In only a matter of seconds, their whole world changed. I would say their aspirations for me were completely shattered when they heard what comes along with a muscle-wasting disease such as Duchenne. They had never heard of Duchenne or muscular dystrophy for that matter, as there is no history of Duchenne in my family. My mother isn’t a carrier, so it isn’t hereditary in my case. As I was so young, I can’t tell the story of my diagnosis in the first person, but I can only imagine how my parents were feeling with all this new information.
This was 20 years ago, so research has improved a lot, but they were told the worst outcome: most likely, I would only live until my early to mid-teens.
Growing up with DMD
I didn’t really know what Duchenne was growing up, but I knew I was different. By the time I was five years old, I had a wheelchair and was taking steroids.
I don’t remember much from that time, as I was so young, but I do remember little things, such as my fish-themed spoke guards, my tiny little blue wheelchair and especially all the kids in my class wanting a wheelchair as a gift for Christmas, as they didn’t understand why I had one and they couldn’t.
I remember having to go to the doctor a lot more than other kids and missing more school. I would have to do exercises, such as being timed on a stopwatch, running up and down stairs and getting up and down on the floor.
As time went on, my speech improved through attending a speech and language therapist. I have an older sister named Aoife, and as I couldn’t pronounce my A’s, I would call her Eda. I clearly remember coming home so excited to say her name, when I got in my front door, she was there, and I said, “Hi Aoife.” The delight on her face was priceless.
I don’t remember much more until I got a little bit older. Through steroid use, I gained weight and would struggle with my bowels and constipation. I remember my stomach hurting and not understanding why.
My mother told me that steroids really did help me for the first few years, but as time went on, the negatives outweighed the positives.
I didn’t only struggle with weight gain or my bowels, but my mood started to change. I was once a happy kid, but as time went on, I turned into someone who wasn’t recognisable–a miserable and angry kid.
After five years, when I was 10 years old, my parents decided to take me off steroids. I would say it was a very hard decision for them, but for me, it was the right decision. As I was so young, I really don’t remember much; maybe I have blurred some memories out.
My diagnosis is something I’ll always hold dear to my heart, as DMD is a huge part of my life. I wouldn’t be where I am today without DMD, and I have accepted my diagnosis for what it is. Life goes on, and it just becomes your normal.
