By Josh Whitener in The South Charlotte Weekly
Published on March 9, 2015
Laura King Edwards can now add the Lone Star State to the growing list of locations where she’s run to raise awareness of rare diseases – and to honor her 16-year-old sister, Taylor.
Edwards, an avid runner, set a goal last year to run a race in all 50 states to support the search for a cure for rare diseases through raising funds and awareness for rare disease organizations – including Taylor’s Tale, a nonprofit the Edwards’s family founded in her sister’s name.
Taylor was diagnosed with Batten disease in 2006. The rare, fatal childhood disorder is categorized as one of the neuronal ceroid lipofuscinoses, or NCLs, which occur in an estimated 2 to 4 out of every 100,000 live births in the U.S., according to the National Institute of Neurological Disorders and Stroke.
Though Batten disease and many other illnesses are classified as “rare,” grouped together they are anything but.
“Rare diseases affect 1 out of 10 (Americans). There are millions of people fighting some rare disease, and they have to wake up every day to find out they don’t have any treatment they can count on,” Edwards said. “Ninety-five percent of rare diseases have no treatment – that’s just unacceptable.”
Edwards ran the 2013 Thunder Road Half Marathon blindfolded in honor of her sister, who lost her eyesight due to Batten disease. The experience fueled a passion that led Edwards to set a goal of eventually running a race in all 50 states in honor of Taylor and the millions of people fighting rare diseases.
On Feb. 28, World Rare Disease Day, Edwards completed the Woodlands Half Marathon in Texas, which raised money for the Will Herndon Fund. The nonprofit is named for 12-year-old Will Herndon, who is fighting Batten Disease. The organizations is part of the Austin, Texas-based Beyond Batten Disease Foundation, which Edwards called “an important advocate in the fight against Batten and other rare diseases.”
“(Will’s family is) so much like our family,” Edwards said. “They’re heartbroken over the diagnosis, but really determined to build a better future.”
Batten disease patients lack an enzyme needed to clean out the body’s cells. The enzyme’s absence causes cells to die, resulting in blindness, seizures, loss of motor and cognitive skills, speech impediment and, ultimately, death. Taylor was an 8-year-old, straight-A student at the time of her diagnosis, but her health has deteriorated considerably over the years. She’s now confined to a wheelchair, completely blind, nonverbal and relies on a feeding tube.
Edwards knew she wanted to “knock out a big state” for World Rare Disease Day, which led her to choose the race in Texas. But just a few days prior to leaving for the race, Edwards nearly cancelled her plans. The Wednesday before the race, Taylor was rushed to a Charlotte hospital due to uncontrollable seizures.
“We weren’t sure at that point if she would ever leave the hospital,” Edwards said. “I was worried that if I left (for Texas) I would be saying goodbye to her for good, and seriously considered cancelling the trip.”
Taylor pulled through, however, and Edwards received a text from her dad while she was packing her bags to leave for the airport, saying Taylor was being discharged from the hospital.
“When I saw her Thursday night, (I thought) she shouldn’t have been discharged the next day, but that’s the fighter she is,” Edwards said. “I think it just added to the whole impact of this race and why I was running. It reminded me of the horrors that something like Batten disease afflicts … I want to do everything I can to make tomorrow better for kids like her.”
In addition to a number of races in North Carolina, Edwards completed races last year in South Carolina, Tennessee and Oregon. She plans to run races in Virginia and North Dakota this spring, and is looking forward to running in Hawaii – a place Taylor always wanted to go, but never had the chance to visit – in September.
“I think the biggest thing that always goes through my head is how much of a blessing it is that Taylor is my sister,” Edwards said. “She just inspires me in everything that I do and gives me the ability to do things I never thought were possible.
“I’m not out to win any prize money or make the Olympics …The fight to be able to help children like her is channeled into the energy it takes to run when that gun is fired on race day.”
Find more information about Taylor’s Tale at www.taylorstale.org. Follow Edwards’s story at www.writethehappyending.com.
Read original article HERE.