Nick Hernandez is a familiar figure on campus, wheeling around from class to class with his aide Kayla Balander. Nick was diagnosed with Duchenne Muscular Dystrophy at age eight, and his diagnosis has inspired him to take action to both raise money for research and educate people about the disease.
Muscular Dystrophy is a group of inherited disorders that typically cause muscle weakness and loss of muscle tissue, which gets progressively worse over time. Nick’s condition is the most common and most severe form of the disease, and is caused by a defective gene for dystrophin, a protein in the muscles. "Physically I’m doing a lot better than most kids with what I have," he says. "They told my mom I probably wouldn’t live to be 18. I’m 24 now so I’m doing well."
"During my last summer break," Nick said, "I was inspired to raise awareness for the disease and raise money to foster research activities." What he has done is begin a fundraising effort for the MDA Muscle Walk taking place March 17 at the Stubblefield Center at UA Fort Smith. Working through Ozarks’ Phi Beta Lambda (PBL) organization and the Fort Smith chapter of the Muscular Dystrophy Association (MDA), Nick hopes to raise enough money to help fund research and to send a child to Camp Aldersgate, in Little Rock.
For his fundraiser, Nick is taking donations for bracelets toward a goal of $1,000. "I’ve been to Camp Aldersgate in Little Rock three different times," he said. "The upcoming muscle walk is part of our ‘Nick Goes Beyond’ project that I am working on with PBL. In addition to the bracelets, I hope to make t-shirts and maybe create other items that can be sold to go toward research and related needs. The proceeds that are collected will be divided among the Muscular Dystrophy Association, the Make-A-Wish Foundation, and possibly the Darius Goes West Foundation." Nick said he has been a recipient of the Make-A-Wish Foundation and he knows firsthand how special the moments created by the foundation are.
His efforts though, won’t stop with the MDA fundraiser. Nick also plans to actively spread the word about Muscular Dystrophy by working directly with the Darius Goes West Foundation. "Darius Goes West" is a documentary about Duchenne Muscular Dystrophy and one individual who has it. As part of the Darius Goes West Foundation, Nick will go to local high schools to show the film. "I was inspired to make an initiative to spread awareness about Duchenne Muscular Dystrophy because during my high school days I felt that not everyone at school knew why I was in a chair," he said. "I realized that I didn’t want my college classmates to wonder either, so I have created a community service project to tell my story and spread awareness for the disease."
His work on these projects has led Nick to set some new goals for himself. After he graduates in May with his marketing degree, he hopes to continue working with MDA or another organization directing their efforts toward Muscular Dystrophy education and research. "In the last few days I’ve figured out since I’m continuing to do fundraisers for MDA, I want to do something with them long term if I can," he said. "And maybe some involvement in sports. So I’m applying to do further fundraising with the Fort Smith chapter of the MDA. Some of the requirements for fundraising coordinator jobs include prior experience, and I definitely have that. Plus I’ll have my degree at the end of this semester, so that’s my first option. I might look into counseling work at Camp Aldersgate as well."
Nick says he has really enjoyed his college experience. "I like U of O because it’s so close knit," he said. "People care. People are always opening doors for me! And I made a comment during Assessment Day a couple of years ago about the possibility of their getting automatic door-opening buttons. Within two weeks they’d already started installing them! It’s a wonderful place where you’re a voice, rather than only a number."
He has solid advice for any college students like himself who face challenges. "Don’t be afraid to ask for what you need," he said. "I’m still working on that one. I don’t want to be a burden on people, but here at U of O you don’t have to worry about that. If you need things, say so. That’s part of why you’re here. Like with the Assessment Day I mentioned, say what you need to and they’ll help. That’s one reason I chose Ozarks."
And while Nick has overcome challenges that most people can’t even begin to imagine, he is modest about his accomplishments. "One thing I’ve been saying since I’ve been doing this is that if I can impact even one person with what I’m doing, then I’ve made a difference," he said. "Even if none of this is for my own exclusive benefit, I like to think of it being for someone else’s benefit in the future."
Topics: Student Organizations