By Lena Mitchell/NEMS Daily Journal Corinth Bureau
TISHOMINGO – She loved to laugh, and the joy of laughter is something her illness never took away.
Virginia Darlene Martin Holiday died Sept. 1, at age 47, of spinocerebellar ataxia.
Today is International Ataxia Awareness Day, and Virginia’s daughter Jasmine wants to not only bring attention to this devastating disorder, but also let others know how her mother lived life to the fullest in spite of it.
“On Mama’s worst day she had a sense of humor,” Jasmine said. “She might be having the worst day, but if something got her attention she’d be grinning from ear to ear.”
Virginia was a young mother of two children – Brandon, 7, and Jasmine, 2 – when she was diagnosed with the hereditary degenerative disorder in 1991. She and Wayne Holiday had been married eight years, living in her hometown of Tishomingo, and she was working as a licensed practical nurse after graduating with her associate’s degree from Muscle Shoals (Ala.) Technical College.
“She didn’t show any signs, but would come home from work extremely tired,” Wayne said. “She didn’t have any tremors or other symptoms, but one time when she got home she was so tired she couldn’t even walk from the car into the house.”
There are several categories of ataxias, and Virginia suffered from a hereditary ataxia caused by a defective gene. Early signs of the illness include problems with balance and as it progresses usually includes general weakness, slurred speech, difficulty swallowing and memory loss.
When Virginia’s symptoms began to appear her uncle Houston’s widow, Debbie Orrick, told the family Virginia’s symptoms looked like the illness that had claimed her husband.
“Houston was her mom’s first cousin,” Wayne said. “He’d been disabled for quite a while and she gave us information about a neurologist in Tupelo to see.”
That neurologist dismissed all the information they brought to him and proceeded to run numerous tests, telling them he thought it was a muscle problem. When all of those tests came back negative, he finally listened to what the family had to say.
By then, though, they had lost confidence in him.
Another physician referred them to a neurologist at the University Medical Center in Jackson, who made the specific diagnosis, Wayne said.
“She was extremely weak when we first went, but she gained a lot of strength back with his treatment,” Wayne said. “Most of the research on ataxia is for a different variation than what she had, though, so his resources were limited to continue treating her.”
The life expectancy for someone after diagnosis is usually 10 to 30 years, according to ataxia literature.
Virginia was 27 when she was diagnosed. However, her son Brandon, now 27, was diagnosed with the illness several years ago when he was an undergraduate at Freed-Hardeman University. He has since earned his bachelor’s and master’s degrees in Bible with an emphasis on youth ministry.
Brandon currently lives in Lexington, Tenn., where he helps at Broad Street Church of Christ, which he attends.
“I just don’t understand it because it came on Brandon so quick,” Jasmine said.
When Wayne asked the neurologist early on if the children should be tested for the gene that underlies the hereditary disorder, he was told they should not, and Jasmine said even now she has chosen not to be tested.
“I’d rather not know,” she said.
What she does want now is to raise awareness and money to support research on the condition.
Throughout her childhood when her young friends asked, she described the illness as something like Parkinson’s disease. Others use descriptions that compare it to multiple sclerosis.
For her 22nd birthday tomorrow, Jasmine wants to increase awareness of the condition.
“A lot of people don’t know about the disease, period,” she said. “One time when I had to take Mama to the hospital emergency room they wanted to treat her for a stroke. I tried to tell them what the condition is, but they wouldn’t listen. Once when she had to have a CT scan, they kept telling her to ‘be still.’ I told them she would if she could.”
As Virginia’s symptoms worsened the family decided that having a therapy dog would be good for her.
She chose Diesel, a Miniature Schnauzer who was her constant companion for two short months before her death.
“She picked him out, and every time he jumped up on the bed it made her smile,” Jasmine said.