PFLUGERVILLE, Texas - Community members gathered Sunday for "Ryan's Day 12," the 12th annual fundraiser to raise money for research on a disease called Duchenne muscular dystrophy.
"A lot of kids with this disease, they don't live as long as where I'm at right now, 30 years old," Ryan Schmidt, who lives with the disease, said.
His mother Leslie Schmidt says many people with the disease don't live past age 25.
Ryan's nonprofit, "Inspiration on Wheelz," puts on Ryan's Day every year to raise awareness and funds for research on Duchenne muscular dystrophy, a rare genetic disorder that causes muscles to lose function and currently has no cure.
Duchenne muscular dystrophy affects fewer than 50,000 people in the United States, according to the National Institutes of Health's Genetic and Rare Diseases Information Center, and occurs primarily in males. Early signs may include delayed ability to sit, stand, or walk and difficulties learning to speak. Muscle weakness is usually noticeable in early childhood, between 2 and 11 years old.
"I'm going to live my life to the fullest. I want people to do that. I want to make people happy, and I want to try to find a cure for Duchenne muscular dystrophy to help my people out, because they're dying, and this is what this fundraiser's about," Ryan said.
Ryan was diagnosed at age four and faced many challenges growing up. "I was kind of mad at the world a little bit. I wasn't able to do what everybody else could do," he said.
Leslie talks about one of the many struggles. "It's just heart-wrenching because, like, my son wanted to be a basketball player, and I knew he wouldn't be able to be one, but I had to coach him on, 'yes you can,'" she said.
As a teen, Ryan found God and music. He now has five albums.
Priscilla Ritchie is one of his nurses. "Everything from getting him up, bathing him, all of his medications, trach care, breathing treatments," she said. "Everything day-to-day that people take for granted, I do for him."
"Some people, they think just because we can't move that we can't talk for ourselves. We're just the same as everyone else. The only thing that's different is you can see our problems, and some people you can't see their problems. Ours is just there for the world to see," he said.
"He's got the best spirit, the most positive attitude, and his aura about him just brings peace to people," Leslie said.
Leslie says her advice to other families dealing with the same thing is to connect with one another. She recommends Parent Project Muscular Dystrophy.
She also says Ryan's persistence teaches others. "People see him and feel sorry for him at first, but then they see how he is, and they start feeling bad about themselves thinking, 'oh my God, if he can do this, I can do that,'" she said.
The event also marked the release of Ryan's new CD called "Music Saved My Life."
To learn more about Inspiration on Wheelz, visit the nonprofit's Facebook page.