HUNTINGTON disease has taken Donna Babcock's job and her house.
But it was losing her driver's licence to the disease -- a hereditary disorder that has a devastating impact on the brain leading to death -- that affected her the most.
'It's one day at a time, that's all you can do. One of her doctors said she's the same person, it's just a different chapter of the book' - Stacy Gerow, left, with her mom, Donna Babcock
Now Babcock, 60, is hoping the disease doesn't take her life or the lives of her adult children.
"The lifespan of a person with HD is supposed to be 10 years and I've lived with it for seven years," she said. "I have cried a lot, but you have to get over it. There are still things I want to do.
"But I know my children will be around to get the cure -- that's so wonderful."
Huntington disease, like so many other diseases and syndromes, was named after the doctor, George Huntington, who first described it in 1872. HD causes cells to die in parts of the brain that control body movement and cognitive functions.
One in every 10,000 Canadians has HD, while one in every 1,000 Canadians knows someone who is touched by HD.
People with HD die, not from the disease, but from complications. They can die from heart failure, infection or literally, as a current promotion says, they can choke to death while trying to swallow.
HD is also a genetic disorder -- you can't 'catch' this type of disease -- but each child of a person with HD has a 50 per cent chance of inheriting the disease.
To help people with HD, the Huntington Society of Canada was founded in 1973. It has a chapter here in Winnipeg.
The society supports and funds research, services -- including a support worker -- and education about the disease in the community.
To help fund services for local people living with HD, the society is holding its 12th annual Huntington's Indy Go-Kart fundraiser on Sept. 8 and 9 at Thunder Rapids Fun Park. A special media celebrity challenge is being held during the event on Sept. 9 at 1:20 p.m. For more information, call Vern Barrett at 694-1779.
Babcock said her father had HD and so did his mother. Her sister and brother also have HD.
Babcock said she knows the disease has wrought changes in her since her diagnosis.
"It's a real change," Babcock said. "And it's every day. Every day you realize there is something else you can't do.
"It's making a sandwich. Or walking down a hallway. Going to the bathroom. It's everything."
Stacey Gerow, Babcock's daughter, said she also sees the changes HD has made to her mom.
"I never thought at 30 years of age I would have power of attorney," Gerow said.
"It's one day at a time, that's all you can do. One of her doctors said she's the same person, it's just a different chapter of the book."
Gerow's older brother has found out he carries the HD gene, but she says she hasn't decided whether she wants to know.
"The phone number I can call for the test is at the front of my book, but I haven't yet," she said.
HD is different in another local family.
Brett Mitchell has a family history of HD, but he has won the gene pool equivalent of the lottery: while his father has HD, both Mitchell and his sister do not carry the HD gene.
"If you don't have the gene, you can't pass it on," Mitchell said.
"It's like if someone doesn't pass you the football, you can't pass it. My wife and I weren't going to have kids, but when I found out I didn't have the gene, we changed that and we now have three kids.
"We're so lucky."
Besides Mitchell's father, his aunt has HD, as do his grandfather, and his great-grandmother. They haven't gone any further back in their family tree.
Don Lamont, executive director of the Huntington Society of Canada, said fundraising events such as the Go-Kart race helps fund the 23 people they have across the country acting in support of people with HD and their families.
"They meet people diagnosed with HD and they identify any needs they have and link them to community agencies," Lamont said. "They glue things together for families."
Lamont said the numbers of people afflicted with HD may seem small, but they represent a large cost to society.
"It affects people in the prime of their lives and the dollar cost of this disease is significant. When you add up everything, from medical interventions to lost wages, it represents a $3-billion loss in productivity per year in North America."
Ray Truant, a professor in the biochemistry and biomedical department at Hamilton's McMaster University, and chairman of the society's scientific advisory board, said scientists made a breakthrough last year, but he emphasized it isn't a cure.
"There are increments being made towards a therapy," Truant said.
"We're looking for a therapy that will help people, and increasing the quality of life is the big goal here. We want to keep them in their jobs and keep their careers.
"And if the treatment keeps you alive until you're 97, do you need a cure?"
As Babcock gets ready to face the next stage of her life -- giving up her apartment suite and living in an assisted-living centre -- she said she still hopes researchers find a cure or treatment that will help her. And she has some major reasons to be hopeful.
"Having a family is why I'm here," she said.
"It gives me a reason to wake up every day, to see my children and my grandchildren."
kevin.rollason@freepress.mb.ca
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