My Challenges
I was diagnosed with Duchenne muscular dystrophy at the age of 2. Some ways in which it affects me include moving at a slow pace, difficulty getting up after sitting on the floor, and exhaustion when climbing up stairs. Therefore, I require accessibility in my surrounding environments, be it houses, concert venues, hotels, and restaurants. However, even if the accessibility is not perfect, me and my parents always figure out a way to make my experience better. As for the autism, my parents knew from my mannerisms and inability to say words until the age of 4 that I had such a mental condition. By the age of 5, it was determined that I had autism, which has shown many pros and cons to me throughout my life. Pros include ability to remember things I attend to, being honest about everything, and being able to clearly communicate my needs to whoever is taking care of me. Cons include stress when routines cannot be maintained, inability to filter out unnecessary information in my environment, and anxiety as a result of these things.
My Support System
My parents, my friends, my past caretakers, organizations like the MDA (Muscular Dystrophy Association), my video collaborators, and the rest of my family are among the people who have always been there for me. Below I have shared details about the organizations that have supported me, and I now advocate for them.
Living with Duchenne Muscular Dystrophy
During the pandemic in 2020, I began work sharing my story on Duchenne.com. I was introduced to a group called the Sarepta Engagers to create a series of videos to inform others of the Duchenne community's achievements and challenges living with this disease (click on the topics to the left to view these videos). There is currently no cure for Duchenne Muscular Dystrophy, but there are treatments for this degenerative muscle disease. Therefore, the continued support for organizations like the Muscular Dystrophy Association is necessary to improve the quality of life of the individuals living with this disease.