Shalveys step forward in fight against Huntington’s

It’s a warm Tuesday afternoon and the Shalvey family is enjoying the sun out on their patio while their dogs, Sam and Jerry, run around the yard.

Add in their white picket fence and the image is idyllic – but not uncommon for Bill and Lynne and their two daughters, Caitlin and Kelly.

An outsider could argue that they have it all, but they would be missing perhaps the most defining detail of the close-knit Shalvey family.

Bill is battling Huntington’s Disease.

A genetic condition, Huntington’s is a neurodegenerative disease that affects balance and movement control and extends to the impairment of cognitive ability. The first sign is usually depression.

While there is no cure or specific course of treatment, Bill is fighting back however he can. He is currently enrolled in a medical trial, sees specialists at Massachusetts General Hospital and recently started taking a medication called Coenzyme Q10, which he says has made a world of difference and helped him to walk again without the aid of a cane.

“Actually, I feel pretty good,” he said with a smile.

Part of his positive attitude is helping other patients cope with their condition. He attends monthly support group meetings and is an active member of Rhode Island’s affiliate of the Huntington’s Disease Society of America. Bill and his family will join with other members this Saturday for the second annual Team Hope: Walking for HD event at Colt State Park in Bristol.

“Last year was the biggest walk in New England and it was our first year,” Bill explained.

Team Shalvey was the largest group during their inaugural three-mile walk, which raised a total of $21,000 – an impressive feat for Rhode Island’s first stab at Huntington’s fundraising. This year they are faced with a tougher economic climate, however.

“We’ve lost all our corporate sponsors but we might make up for it in the smaller amounts,” Bill said.

Team Shalvey has already raised over $1,100 and Bill hopes the money will keep coming in. If Rhode Island is able to demonstrate the ability to fundraise independently, they can form their own chapter and therefore determine how the money is spent.

Research is critically important to Huntington’s patients and the Shalveys believe a cure is not far off.

“I think they’re close,” said Caitlin, who speaks knowledgably about the ins and outs of the condition. “I think the biggest thing is they’ve pinpointed the gene and they know how the gene is mutated.”

Lynne agreed, noting the importance of stem cell research and explaining that even in a single decade, doctors have made leaps and bounds toward more advanced treatments.

“I think it’s not that far off,” she said of a potential cure.

Huntington’s is often misdiagnosed because of the similarities with other neurological conditions like Parkinson’s. When doctors first began to pinpoint the cause of HD, patients had little recourse for treatment. Bill’s sister died at the age of 32 from the disease that he suspects took the lives of his father and grandfather as well. Diagnosis is still relatively new, however, with a blood test for the condition only being developed in 1993.

Several years ago, Bill began to suspect he might be a part of the pattern.

“I’d say about four years ago I started noticing my body having twitches that I couldn’t control,” he said. “I knew something was wrong.”

At the time, Bill was a journeyman electrician with a family to support. When the results came back positive, the news was understandably tough to swallow.

“When you get Huntington’s it’s like a time clock – you never know when it’s going to go off,” he said.

The same is true for the Shalvey girls. They each have a 50-50 chance of inheriting the Huntington’s gene and are faced with the dilemma of whether or not to test.

“I tell the kids now, at this time, you wouldn’t want to get tested but it’s a decision they’ll have to make on their own,” Bill said.

Getting insurance or even a job can be difficult once a diagnosis happens, however, so it is unlikely the two young girls – Caitlin is 23 and Kelly is 20 – will find out anytime soon.

“Nobody gets out of this life alive. Until I find out there’s an actual treatment or even a cure, then I won’t get tested,” Kelly said.

From the onset of symptoms, Huntington’s patients generally have somewhere between 10 and 15 years to live, with some surviving as many as 25.

For the Shalveys, it’s about making the most of their time together.

Instead of dwelling on his condition, the charismatic Bill spends time with his family, kayaks in Narragansett Bay and works on the boat he just bought.

“You’re always doing stuff,” Kelly said to her father, to which Lynne quickly added with a laugh, “He’s always going out to breakfast with someone.”

After spending even a short amount of time with the Shalveys, it’s clear that the family is close, though Bill says his condition has often put strains on their relationships. While Lynne and Caitlin struggled with dealing with the initial diagnosis, it took a while for the idea to settle on Kelly. For now it appears they have come to terms with the situation and are able to focus on appreciating one another.

Bill’s three favorite women recently got tattoos with portions of an old Irish blessing. “May the road rise to meet you,” reads Lynne’s, “May the wind be always at your back,” is Caitlin’s and “May the sun shine warm upon your face,” is Kelly’s. Bill will soon complete the blessing by having the entire verse in a tattoo –a permanent testament to their family’s bond.

“I’d rather have 10 quality years than 20 years that aren’t as good,” Bill said. “I think if a person stays positive you can get through things like this.”

To make a donation to Team Shalvey, go to Last minute participants in the walk can register starting at 9 a.m. at Colt State Park on Route 114 in Bristol.

© 2009 Warwick Beacon