Edwards, of south Charlotte, will run the course without the advantage of sight to honor those who’ve fought or are fighting rare diseases. She also hopes to raise funds for gene therapy research at the University of North Carolina at Chapel Hill, as well as increase awareness of different rare diseases.
But her efforts are fueled by something more personal than all that. Edwards’s 15-year-old sister, Taylor, was diagnosed in 2006 with Batten disease – a rare, fatal childhood illness. The genetic disorder involves a missing enzyme needed to clean out the body’s cells. Without the enzyme, cells begin to die, causing blindness, seizures, loss of motor and cognitive skills, speech impediment and, ultimately, death.
“It’s vary rare, but obviously a very devastating diagnosis,” Edwards said, adding the disease affects mostly children, along with some adults, and can manifest itself in multiple ways. “It is universally fatal. If you have Batten disease, at least right now there’s not a treatment or cure that will save you.”
Taylor was 8 years old at the time of her diagnosis. Always a straight-A student, Taylor began having unexplained trouble in school and problems with her vision. After her diagnosis, Taylor and her family were faced with a choice: lay down in defeat or pull out their boxing gloves and get to work.
“They tell you essentially to go home and make happy memories, that there’s nothing that can be done,” Edwards said. “But not fighting is not really in our character. That’s not really how we’re made, and we decided to do something about it.”
Six months after Taylor’s diagnosis, her family founded the nonprofit Taylor’s Tale to help raise money for Batten disease research. But as they walked with Taylor along her journey, the family discovered there are many rare diseases, most of which receive little funding for research and treatments. They decided to focus Taylor’s Tale not simply on Batten disease, but on a broad range of rare illnesses.
“We wanted it to be bigger than one little disease; it’s about rare diseases as a whole,” Edwards said. “There are more Americans with rare diseases than (the number of people) in the entire world (who have) cancer. Ten percent of all Americans have some kind of rare disease.”
Edwards hopes running the Thunder Road course will allow the nonprofit to continue helping fund a gene therapy initiative at UNC-Chapel Hill, which could generate a clinical trial by 2015 if funding continues.
“It’s really exciting to think we can make this happen for kids like Taylor right here in our state,” she said.
But running blind also is very symbolic for Edwards. Blindness hit Taylor in 2008, when she was in fifth grade. Despite the loss of her sight, Taylor was determined to participate in the 2008 Girls on the Run 5K – and did so, tethered by a bungee chord to a fellow runner.
“Watching her cross the finish line is probably the most inspiring thing I’ve ever seen,” Edwards said.
Following in her little sister’s footsteps, Edwards will run alongside a fellow runner, holding an about two-foot bungee chord. Though training has been a challenge – especially her first time running with her eyes closed, which she said was very disorienting – she’s also learned a lot along the way.
“I have learned so much about Taylor’s world, just in training alone,” Edwards said. “You learn so much from the way crickets sound, the way the road feels underneath your feet, the way rain feels. When you remove visual sensory things, the world really gets open to you.”
Edwards, her fellow runners and family plan to wear purple – the signature color of Taylor’s Tale – to “turn the course purple” for Taylor, who’ll hopefully greet her older sister at the finish line.
“I can’t wait to cross the finish line and take off my blindfold in a symbolic move, like running to the light,” Edwards said, “because I hope someday that we can bring the light to many kids like Taylor.”
Follow Edwards’s story through her blog, www.writethehappyending.com, and learn more about Taylor’s Tale at the nonprofit’s website, www.taylorstale.org.