Kyle Ornelas

Living with Duchenne Muscular Dystrophy is tough, but it will not steal my joy. The toughest part about living with Duchenne is losing the ability to physically do certain things that you were able to do a month or even a week before. When you lose the ability to do something you realize real quick how much you take for granted and you develop a greater sense of appreciation for the things you are still able to do. Within a few years of diagnosis of Duchenne, a boy’s body deteriorates at an unrelenting pace. You go from being an active kid, being able to physically do the same activities that your friends can do, to being confined to a wheelchair and being fully reliant on someone to help you out with everyday tasks-like getting you dressed to feeding you. Losing the ability to walk was one of the toughest things I had to deal with. It all started on the first week of my seventh grade year when I fell down and couldn’t get up. This wasn’t the first time I fell at school before, but it was unlike any other fall before because it turned out this was the beginning of the end, in terms of not walking again. The next morning at school I tried to see if I could do it, but I just felt so weak that I had to be pushed around school in a wheelchair. As I was being pushed through the hallway to my class there were so many thoughts going through my head about how the other kids were going to react once the door was opened up. As it turns out, I had some of the best friends that anybody could ask for! They didn’t care about the fact that I was in a scooter, they just saw me for who I was as a person and helped me out with whatever I needed. We also continued to play basketball at recess and lunch I drove a scooter to get around at school for the seventh and eighth grade. In the summer prior to starting high school I started using a power wheelchair full-time. Duchenne runs its course on its own agenda, without warning something you could do one day is made more difficult the next. When you read about Duchenne Muscular Dystrophy it says at this such and such age this will happen. Even though they say most boys stop walking in their early teens, there is no handbook on how to handle tough situations like these. I didn’t ever really think as a young kid that someday I wouldn’t be able to walk ever again. It hit me hard and it took me awhile to adjust to life without being able to walk. You all know how middle school goes, you have so many other issues to sort through that adding this to my plate made life that much more complicated. As I came to grips with it all, I said if I could just maintain strength that I still had that I didn’t have to be able to walk to live a good, meaningful life. My disease has progressed in ways that has made life a little more challenging. I just try to live life day by day and to think about all the blessings in my life and all the abilities that I still have.

It has been a little over 9  months and we have reached Kyle’s goal but  we would like to thank everyone who have donated or who have shared his fundraising page. None of this would of been possible without your tremendous support and generosity from you awesome people! Help improve the lives of individuals with Duchenne. Join me in our fight to Knockout Duchenne! #KODuchenne