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 email@example.com.
Show commenting policy
TribLive commenting policy
You are solely responsible for your comments and by using TribLive.com you agree to our Terms of Service.
We moderate comments. Our goal is to provide substantive commentary for a general readership. By screening submissions, we provide a space where readers can share intelligent and informed commentary that enhances the quality of our news and information.
While most comments will be posted if they are on-topic and not abusive, moderating decisions are subjective. We will make them as carefully and consistently as we can. Because of the volume of reader comments, we cannot review individual moderation decisions with readers.
We value thoughtful comments representing a range of views that make their point quickly and politely. We make an effort to protect discussions from repeated comments either by the same reader or different readers.
We follow the same standards for taste as the daily newspaper. A few things we won't tolerate: personal attacks, obscenity, vulgarity, profanity (including expletives and letters followed by dashes), commercial promotion, impersonations, incoherence, proselytizing and SHOUTING. Don't include URLs to Web sites.
We do not edit comments. They are either approved or deleted. We reserve the right to edit a comment that is quoted or excerpted in an article. In this case, we may fix spelling and punctuation.
We welcome strong opinions and criticism of our work, but we don't want comments to become bogged down with discussions of our policies and we will moderate accordingly.
We appreciate it when readers and people quoted in articles or blog posts point out errors of fact or emphasis and will investigate all assertions. But these suggestions should be sent via e-mail. To avoid distracting other readers, we won't publish comments that suggest a correction. Instead, corrections will be made in a blog post or in an article.