At two months old, my parents first noticed that I was not hitting some of my milestones, but it was not a cause for concern for my pediatrician. When I was around one-year old, my parents noticed that something was a bit off. They noticed that when I would stand, I would put my hands on my knees to push myself up. Though my parents thought it was a cute little quirk of mine, there is actually a name for what I was doing: the Gower maneuver, which is a symptom of Duchenne. While I was in physical therapy for two years with the hope of helping me meet these milestones, it was not until I was about two-and-a-half years old when my physical therapist recommended that my doctor test me for Duchenne Muscular Dystrophy (DMD).
On Christmas Eve 2008, I was officially diagnosed. Duchenne is a condition where there is a lack of dystrophin, which is the largest protein in the body. Dystrophin helps support muscle fiber strength and maintains the structure of muscle cells, and without it, it can lead to muscle weakening and heart problems over time. Duchenne is a progressive condition. Duchenne effects one in 3,500 boys every year. While most cases of Duchenne are the result of a genetic disorder, in my case, it was due to a rare, spontaneous mutation. There is currently no cure for Duchenne, but I am hopeful that one day a curative treatment will be found.
Because of Duchenne, my life looks different than it does for other teenagers my age. Four years ago, I lost the ability to walk, so I use a power chair to move like many other boys with Duchenne. Thankfully, I have a supportive family, including my two older brothers, Luke and Lance, who are my paid home health aides – which is covered through our health insurance. I also have an amazing service dog, Éclaire, who is my companion. Despite having Duchenne, I always try to have a positive attitude by bringing joy to those around me through my sense of humor.
The Fight Continues
Though having Duchenne is a big part of my life, it does not completely define me as a person. One of my favorite hobbies is playing video games because it’s a fun way to connect with friends and my brothers when they are away. I like playing video games because everyone is on the same playing field when it comes to ability, and they are a great way to interact with other kids my age from home. I also enjoy watching sports like baseball, football, hockey and soccer. I really enjoy watching the Philadelphia Phillies and the college games at Penn State.
I have a website, LevisFight.com that my family started for me years ago, you can see what I’m up to throughout the year. It’s also a way for others to support me on my journey. I do not know where life will take me, but I know my family will always be there supporting me through it all. And I want to share my story to help others understand Duchenne and to increase advocacy around this condition, so one day a cure will be found.
Duchenne Muscular Dystrophy (DMD)
Learn more about Duchenne muscular dystrophy, access related resources, and find opportunities to participate in research for DMD.Learn More about DMD