Elijah Stacy, 22 year old author and founder of Destroy Duchenne, recounts how Duchenne has affected his childhood.
I'm Elijah Stacy. I'm 22 years old. I'm an author. I'm a public speaker. The founder of the nonprofit Destroy Duchenne, and I'm also a consultant at Capricor Therapeutics. I was diagnosed when I was six years old but was born with the disease. We started to notice the effects around five.
I was trying to ride a bicycle and I couldn't keep up with my friends. I would fall to the floor frequently. I was walking on my tippy-toes. All these things, and my mom eventually wanted me to get out of a booster seat, and so she went to measure my height against the wall, but I couldn't put my heels down flat on the floor. That's when we started to go in for testing to see doctors, doing blood work, and eventually a muscle biopsy and confirm that I do have Duchenne muscular dystrophy.
Then moving on, when I was 11 years old, I got so weak that I had to use a power wheelchair full-time. That's a dramatic life change and a lot for a little kid to go through. You have all your peers looking at you in the fourth grade and you stick out like a sore thumb being in a wheelchair, so a lot to deal with. Later on in my teenage years, going to high school, trying to answer questions became a lot harder.
You start to lose mobility in your upper limb function. That could be very hard to go through as well because now you're getting impacted in your studies. A lot of things that happen with this disease, but the worst part of the disease is it is fatal. Patients typically pass away when they're 25. That's the average lifespan and so very serious disease that we need to do something about.
On the human side of how can Duchenne impact you as a human being? I think that you can let it really bring you down or you could choose to be positive. It is hard, regardless if you want to take a positive outlook or not. A lot of your peers will go and play sports, and you won't be able to do that. Things will just be harder to do that the everyday person may take for granted, like eating food by yourself or reaching for a book that's high up and you can't do that. You need to ask for help.
These things that make life a little bit harder for patients with Duchenne. I think that something that is really great that the CEO at Capricor says is that, as patients get older, they lose milestones where you look at a healthy person and they get milestones. They learn how to drive at 16, or they go to their career, they're advancing, they're accomplishing these life milestones where patients are losing them. That's an unfortunate part about this disease.
