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Heather Alimossy, 20, trains for her upcoming climb of Mount Kilimanjaro in Africa. Alimossy, who recently learned she has Huntington’s Disease, is determined to live fully and well.Jim Craven

January 29, 2009

By Sarah Lemon

Mail Tribune
776-4487
slemon@mailtribune.com

As Heather Alimossy stretches her legs toward the summit of Mount Kilimanjaro next month, as she exclaims over the view, her thoughts will no doubt turn toward those stricken with Huntington's Disease who can no longer walk or talk.

"I can't procrastinate on my life," says Alimossy. "If I work hard now to find a cure, then maybe I won't have to have symptoms."

Alimossy, diagnosed in November 2007 with the degenerative brain disorder that left her mother wheelchair-bound and unable to speak, is dedicated to raising awareness of Huntington's Disease. Climbing Africa's tallest mountain isn't just the trip of a lifetime. The effort — dubbed Klimb for the Kure — carries the goal of raising $1 million for the Hereditary Disease Foundation, which supports biomedical research.

"People who are affected by Huntington's are normal, everyday people," Alimossy says.

Alimossy herself is a seemingly normal, 20-year-old Rogue Community College student who enjoys riding her Kawasaki motorcycle. She hasn't exhibited any of Huntington's early symptoms, including involuntary twitching, forgetfulness and depression. At 25, her oldest brother, however, lives on disability because his shaking is so severe that he can't work.

"There's no cure and there's nothing for the symptoms," Alimossy says.

Networking with the Huntington's Disease Society of America, Alimossy helped her brother enroll in some of the first clinical trials for prescription medications that may be effective against Huntington's. More than a quarter of a million Americans have Huntington's or are "at risk" of inheriting the disease. Huntington's patients pass the disease to their children in about 50 percent of cases.

Given the statistics, undergoing testing wasn't an easy decision for Alimossy, whose father initially opposed it after witnessing her mother's rapid decline that precipitated the couple's divorce.

"He was afraid I was going to give up on life," Alimossy says.

"I felt that the Huntington's was going to be the one barrier that she wasn't going to be able to get past," says 55-year-old Jon Alimossy of Jacksonville.

Several weeks after submitting a blood sample to a local geneticist, Alimossy had to face the fatal verdict. The same disease that robbed her mother, Vickie, of relationships, self-reliance and reason would steal Alimossy's mental and physical faculties, too.

"It just destroyed me," Alimossy says, "I kind of just moped around."

Within a month of receiving the diagnosis, Alimossy gathered the courage to visit her mother in a Grants Pass nursing home and confront her own future.

"Seeing my mom's body the way it is now makes me want to do so much with my body."

Competing in BMX and motocross races for much of her childhood, Alimossy finds bicycling and hiking a little tame. But organizers of the Kilimanjaro expedition recommended "a lot" of walking, Alimossy says, in preparation for the seven-day trek that will end at 19,340 feet above sea level.

So the past month since she signed up for the fundraiser has seen Alimossy either climbing the Table Rocks, hiking trails around Jacksonville or biking the Bear Creek Greenway virtually every day of the week. She leaves for Africa on Monday.

"I want to make it to the top no matter what."

A safari planned for the trip's end is sure to be another highlight, Alimossy says. Once she returns to Medford on Feb. 24, Alimossy says she'll pursue other fundraisers, perhaps bowling for Huntington's, as well as opportunities to speak about the disease and show a video she made of her mother at various community venues, like her church, First Presbyterian of Jacksonville.

Vickie Alimossy has heard about her daughter's trip, although it's uncertain whether she will recall the conversation.

"She can't really tell me how she feels about it," Heather Alimossy says.

But her mother's pride was obvious, even if her comprehension was fleeting.

"She got a big smile on her face."

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