For the past 13 years, I have been living with Duchenne. It causes my muscles to waste away over time, so I use a power wheelchair, and I have very weak physical strength. I am entirely dependent on those around me to care for all my basic needs and meet with a lot of doctors to maintain my health. Oh, and let’s not forget all my medications that taste bad and have all these fun side effects!
I now have a personal care assistant to help me navigate around school and assist with my academics, note-taking, and personal needs. I don’t consider these things a negative, well maybe the medicine, but I am grateful to have all of these supports when I need them.