Hostetter family crusades for an end to brain disorder
Mary Howard of Hostetter has watched a number of family members suffer from Huntington's disease, including her daughter Christina.
“It just gets worse; and when you think it's at its worst, it just gets worser,” she said.
Her daughter died this spring after seven years with the disease, an inherited brain disorder that results in the progressive loss of mental faculties and physical control, according to the Huntington's Disease Society of America.
Howard called it a combination of “Alzheimer's, dementia and schizophrenia” that presents symptoms between ages 30 and 50.
“She loved her country music,” Howard said of her daughter, who worked for Sony in East Huntingdon before becoming a certified nurse assistant. “She was always happy and giggly and bubbly. All that changes with Huntington's.”
Howard and her daughter Danyel Wineland hope to educate more people about the debilitating disease and raise money for research with a fundraiser from noon to 6 p.m. Saturday at Legion Keener Park in Latrobe.
“I watched my sister suffer, and I don't want to see anyone else suffer,” Wineland said.
After showing symptoms such as personality changes and mood swings, forgetfulness and impaired judgment, unsteady gait and slurred speech, the disease weakens the brain and body.
“It literally eats away. It erodes (the brain), so depending on what part it erodes is how it affects you,” Howard said.
There is no cure for the disease.
About 30,000 people in the United States are afflicted. Folk singer Woody Guthrie was diagnosed with Huntington's in 1954 at 42. He died in 1967. His wife, Marjorie Guthrie, founded the Huntington's Disease Society of America that year.
Michael Cramer of Latrobe plans to attend the fundraiser this weekend in honor of his fiancee, who died of the disease in 2000. She suffered for four years before passing away at 39.
“I would do it again and again and again. ... At the funeral, she had my ring on. I gave her a kiss,” Cramer said. “I'm happy I fell in love, happier than if I had a billion dollars. You just can't buy love.”
He hopes more research can bring about a cure, but in the meantime events like Howard's fundraiser at least can raise awareness.
“The people I talk to — they know virtually nothing about it,” he said. The event will include raffles, food, vendors and live music.
Because it is a genetic disorder, Howard said, a cure is too late for her daughter, but she has hope that someday children will not have to grow up with the prospect of their lives being cut short.
“I want to see an end to it in my lifetime,” she said.
Stacey Federoff is a staff writer for Trib Total Media. She can be reached at 724-836-6660 or firstname.lastname@example.org.