BLOOMINGTON, Minn. (FOX 9) - The Team Hope Walk this weekend in Bloomington will raise money and awareness about Huntington’s disease, or HD.
It’s sometimes known as "mankind’s cruelest disease" and one of the walkers lived under its cloud for decades.
Huntington’s disease forced its way into Linda Ingle’s life while she was still a child when her sister got the deadly diagnosis.
"She just deteriorated to get to the point where she couldn't walk, she couldn't talk, she couldn't eat," Ingle said. "It was just a horrible way to die."
She died at age 19. HD also killed Linda’s brother at 39. They both lost control of their minds and bodies over the course of a decade or longer.
"It's like a combination of Alzheimer's, Lou Gehrig's and Parkinson's all combined at once," Ingle said. "It's a pretty brutal disease."
HD is a neurodegenerative disease that causes a progressive breakdown of nerve cells in the brain, whittling away at a person’s physical, cognitive and psychiatric well-being.
It’s caused by a defective, but dominant gene, so a parent with HD has a 50% chance of passing it down to each of their children.
Linda’s father died from it, too, so she took one of the earliest available genetic tests in 1989. It gave her an 84% chance of developing the disease.
"I was just devastated by that," she said. "It was always like there was a cloud hanging over my head and just grief and sorrow and anxiety."
Research funded by the Huntington’s Disease Society of America and others pushed the science forward over the years until a new test could give more accurate results. Linda took it in 2010 and marked the calendar for the day of her results.
"Free," she said. "September 7. No Huntington’s."
After decades of living in the shadow of the disease — worrying about herself and her children — a light returned to her life.
"Felt like I was looking up to the heavens and giving thanks," she said.
Linda will always live with the memory of HD and its devastating impact on her family, but she’s walking Saturday for them and for a future without the disease.
"I think there's a lot to be hopeful for," she said. "And then they know so much more about Huntington's, about the gene, about what it does."
The Team Hope Walk is at Hyland Lake Park on Saturday morning. You can find out more about the disease and the walk here.