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Donna Mattingly first noticed something was wrong with her son, Corey, when he couldn’t pay attention in school and was clumsy with his movements.
“When Corey first started showing signs, I knew what it was,” Mattingly said. “I didn’t want him to know. When he died, he didn’t know what he had. If he knew, what reason does he have to live?”
What Mattingly didn’t want to tell her son, who passed away in 2008 at the age of 15, is that he had Huntington’s Disease, an inherited brain disorder that results in progressive loss of mental and physical control. Currently, there is no cure.
The family decided not to tell Corey so he could live life the best he could, Mattingly said.
While some may disagree with Mattingly’s approach, she said it’s the best way she knows how to handle the situation.
“You can’t go by the book with Huntington’s disease,” she said.
Symptoms of Huntington’s disease include personality changes, mood swings, depression, forgetfulness, impaired judgment, unsteady gait, involuntary movements, slurred speech and difficulty in swallowing, according to the Huntington’s Disease Society of America’s website.
“That’s where it starts. The clumsiness. They can’t reason things out,” Mattingly said of people who have Huntington’s disease. “It makes you think you’re going crazy. They can’t reason right from wrong.”
Mattingly said she lost at least four family members to the disease — her son, ex-husband and two former sisters in law — and is afraid she could lose more in the future.
Without releasing names, she said, she knows of at least one close family member who currently has the disease.
“Other family members do have it,” Mattingly said. “But some don’t realize it yet. Some are not symptomatic.”
Now Mattingly and her family are trying to raise local awareness of a disease that not many people know or understand.
Raising awareness locally
Nicholle Edlin, who is related to Mattingly, said she has also seen the effects of Huntington’s disease in her family.
She and her cousin, Christen Ruley, launched Inspired Hope, a non-profit organization that sells custom bracelets to raise money for Huntington’s disease research.
So far, Edlin said she and Ruley have sold $5,000 worth of bracelets, which the two women make.
Earlier this month the duo held a bake sale in front of Walmart, where Edlin said they raised around $1,250 for their cause.
Now they’re organizing a Team Hope Walk for Huntington’s disease, which will be Saturday, Aug. 17, at My Old Kentucky Home State Park. Registration is at 8:30 a.m., with the walk beginning at 9 a.m. Registration is $25.
With the $25, Edlin said the participant will get one ticket for a raffle, T-shirt, breakfast and lunch.
Around 35 items will be featured in the raffle and silent auction.
According to Edlin, the items range from whiskey barrel painted blue and white from Haven Hill Distilleries to various themed baskets.
Edlin said they also plan to show photos of people who have died from the disease and honor them during a moment of silence.
“There are so many people who have it who don’t know about it,” Edlin said. “Since we’ve sold bracelets, we’ve met people who thought they were the only ones in the area who had the disease … It’s been eye opening.”
Living with Huntington’s disease
Having family members with Huntington’s disease is not easy, Mattingly said. They’re prone to fits, physical confrontations and can’t distinguish right from wrong.
People with Huntington’s disease also deny that they’re sick.
Mattingly said Corey thought what he was experiencing was normal.
For example, Corey hit his friend in his sleep when spent the night at his house.
The friend asked Corey why he kicked him in his sleep.
Corey just shrugged it off and said he was born that way, Mattingly said.
Often times, a person with Huntington’s disease appears to be drunk, but Mattingly said, “It’s the disease talking and not the patient.”
Mattingly said her ex-husband, Jimmy Ruley (who passed away in 2005 at the age of 48 from the disease) would tear furniture, cut her phone lines and try to climb out of the window of a car when she was driving. The couple divorced in 2001.
Jimmy was diagnosed with Huntington’s disease in 1999, nine years after his sister was diagnosed with the same disease.
“We didn’t know anything about it,” Mattingly said of Huntington’s disease. “When (Jimmy’s sister) was diagnosed, we didn’t dream that other people would get it.”
In 1999, Mattingly began looking up the disease and finding online support groups to help her cope. She soon found out more people in her family were at risk for the disease.
“It’s hereditary,” Mattingly said of Huntington’s disease. “If the parent has the gene, the child has a 50/50 chance of getting it.”
Mattingly noted that Jimmy’s mother had Huntington’s disease.
Approximately one in every 10,000 Americans has Huntington’s disease, and more than 250,000 others are at risk to inheriting the disease from a parent, according to the Huntington’s Disease Society of America website. Every child of a parent with Huntington’s Disease has a 50/50 chance of inheriting the expanded gene that causes the disease.
Jimmy and Corey died from complications of Huntington’s disease, according to Mattingly.
“The disease doesn’t kill you, the complications do,” Mattingly said. “There are medicines from some of the symptoms.”
Mattingly first noticed something was wrong with Jimmy when he became very uncoordinated with his movements.
“In 1996, we noticed he was clumsy,” Mattingly said. “He was doing things he wouldn’t have normally done before.”
Soon after, Mattingly said Jimmy lost all sense of reason.
For instance, Jimmy knew he would need to shave, but he didn’t know how to use the razor.
Mattingly describes her ex-husband as “a wonderful man,” who got sick. By the end of their marriage, though, Mattingly said Jimmy wasn’t same person because of Huntington’s disease.
That’s why Mattingly told people she lost her husband a long time ago.
Because of the disease, Corey and Jimmy would feel as though they were crawling out of their skin, Mattingly said.
“Corey would scratch his legs raw,” she said. It was (not surprising) for Corey to take six to eight baths a day. He would be red from scratching … It was all day, everyday.”
If someone has a loved one with Huntington’s disease, Mattingly said they should go to support groups to learn that they’re not alone.
“If it wasn’t for (my online support group) I wouldn’t be here,” Mattingly said. “They helped me understand I wasn’t loosing my mind.”
Most of all, though, she hopes people will come out in droves to the walk on Aug. 17.
“There are people in Bardstown who have it,” Mattingly said. “I’m hoping we’ll meet a lot of people who have the disease or know of anyone with this disease … I want to help them out if I can.”