PARKERSBURG - A courageous girl with a huge heart willing to fight for something she believes in is one way Anna Gordon's mother describes her daughter, a sophomore at Parkersburg South High School.
Parkersburg resident Melissa Gordon said her daughter, 15-year-old Anna, discovered she had a rare disease known as Friedreich's ataxia (FA) when she was a freshman in high school. Only one in 50,000 people in the United States has the disease.
"She started falling and losing her balance a lot," Melissa Gordon said of her daughter's early symptoms. "That's when we first started looking into it."
Anna Gordon, left, sits with Greg and Lori Myers’ daughter Jill at a pancake breakfast for a band fundraiser. Anna enjoys cheerleading, band and children and wants to be a teacher. (Photo Provided)
Anna's parents, Melissa and Scott, had no idea they were carriers of the disease, although some parents have multiple children affected by it. They have two other children who haven't showed any signs, Melissa Gordon said.
Anna's sister Ali Gordon is a senior at PSHS and her brother, Chase Gordon, is in sixth grade at Blennerhassett Middle School.
Anna loves cheerleading, marching band and children. She is passionate about becoming a teacher, her mother said.
"It started around her freshman year," she said. "We took her to the doctor between junior high and high school."
Melissa said after a year of seeing doctors the family turned to a geneticist from West Virginia University. She said the only way to know someone has the disease is through DNA testing.
"I got out to my car, did a Google search. I thought my world collapsed; it was devastating," the mother said of finding out what her child would have to encounter with the disease.
A person can be diagnosed with FA as early as 5 years old and as late as 15, Gordon said.
The signs and symptoms of the disease don't show up until right before a person is diagnosed. Parents are carriers and aren't aware their children will have it until after they begin to have symptoms, she said.
Symptoms include loss of coordination, fatigue, vision impairment, aggressive scoliosis, diabetes and a serious heart condition. Not all individuals with the disease have the same symptoms.
Diabetes is common in 10 to 20 percent of patients, research showed. Although there is a progressive loss of coordination and muscle strength, mental capabilities of people with FA remain intact, research shows.
Most young people who are diagnosed with the condition will require mobility aids such as canes, walkers or wheelchairs by their teens or early 20s, studies showed. The disease slowly gets worse and causes those diagnosed to face problems performing everyday activities, research showed.
Most patients need to use a wheelchair within 15 years of the disease's start. The disease is known to lead to early death, Gordon said.
Greg Jones decided he wanted to do all he could to help Anna after the teenager came to his office looking for a way to help not only herself but others suffering with the disease.
"I get a lot of questions," said Jones of his career field. "(Anna) came to my office but she didn't ask for money or donations she simply said 'here's a plan I have; I would like to know how to bring it alive.'"
Jones is general manager for Pepsi in Mineral Wells and is active in the community. He said his company and staff will be involved in raising awareness about the disease.
A "Masquerade Ball to Cure Friedreich's ataxia" will be March 23 at Woodridge Plantation Golf Club ballroom in Mineral Wells.
"Between ticket sales and a silent auction we're trying to trigger $10,000 to give to FARA for research," he said of the fundraiser.
Friedreich's ataxia Research Alliance is a nonprofit, tax-exempt organization dedicated to curing FA through research, according to the website (www.curefac.org).
Melissa Gordon said the faculty, staff and students at PSHS have been very involved and helpful toward her family and daughter's efforts. The PSHS Marching Band, Key Club and Southside Psychos have been involved through planning of the event, she said.
"She's got big plans," Melissa Gordon said of her daughter. "We just have to work on finding a cure."