Glenville Police answer special fundraising call for town girl with limb-girdle muscular dystrophy

PHOTOGRAPHER: Photo Provided

Vivian White, 8, is a third grade student at Pashley Elementary School.

The Glenville Police Department is conducting a special project this month: leading the fundraising charge for Vivian White, a third grader at Pashley Elementary School with Limb Girdle Muscular Dystrophy. White, now 8, was diagnosed with the ailment, which affects the muscles in the shoulders, upper arms, pelvis and thighs, when she was just three-years-old.

Glenville Police Chief Stephen Janik said on Sunday that the idea to focus the department’s fundraising efforts on Vivian was suggested by Officer Cody Jon Maggs, whose daughter attends school with Vivian. Maggs, who is friends with the White family, knew that they had participated in other fundraisers for the Muscular Dystrophy Association in Vivian’s name before. It made sense to him, Maggs said, to get the police department involved in a more active role in helping the family.

“I thought, ‘You know what? We can do this,’ ” Maggs said.

The entire police department is participating in the month-long fundraiser. Each member of the force donated at least $30 to the Muscular Dystrophy Association. In return for their donations, they are allowed to grow a beard for the month of November.

According to the department, its collective donation will generate $750 in initial contributions.

While the money is certainly important, and a huge help to both Vivian and the Muscular Dystrophy Association, Maggs said that the equally important aspect of the fundraising campaign is spreading awareness for a condition that people might not necessarily be familiar with, unless they have a friend or relative who has been diagnosed.

“Regardless of the money that we raise, it’s the awareness, that now people are going to think about these things,” Maggs said.

Also supporting the effort is the Glenville Town Board, as well as the Burnt Hills-Ballston Lake School District.

For Janik, a self-proclaimed stickler for the rules where the outward appearance of the department’s police officers is concerned, allowing them to grow a beard for a donation was fairly major deviation for him.

But when Maggs approached him with what Janik described as the “no-brainer” idea for the campaign, he decided to bend the rules, just this once.

“I’m pretty strict on the appearance policy for the department” he said.

As of Sunday, Janik said, the campaign had collected more that $1,000 in donations. Part of the reason the campaign has been successful thus far is the community mentality that has come to the forefront, he said. With the cooperation of school districts and the town, Janik said that everyone is glad to be on the same team.

“It’s our way of giving back. It’s a good feeling, that we can help out,” he said.

Dustin White, Vivian’s father, said that when Maggs approached his family about raising money for Vivian, they jumped on board immediately.

Vivian’s condition, he said, is not something that every person is familiar with. While there have been breakthroughs in some forms of treatment for variations of muscular dystrophy, Vivian visits the Nationwide Children’s Hospital in Columbus, Ohio each year for check-ins, and the family each year sees how the large variety of branches contained within the disease can make it hard to pin down and raise awareness for.

“It’s not well known to a lot of people,” he said, noting that some people, by simply basing their opinion on Vivian’ s outside appearance, assume that her case is less severe than others due to an absence of physical aspects of the disease, including leg braces all day and the lack of a wheelchair, for now.

That makes raising awareness and raising money to treat the disease a constant uphill battle.

“It could get really bad, but we’re just trying to keep positive, and keep moving,” White said.

But the outpouring of support that the family has seen since the campaign started, White said, has been enormous.

“It’s really an honor. The fact that they want to do this for us is just amazing,” White said on Sunday. “It really means a lot.”

Those seeking to donate can do so directly to the Muscular Dystrophy Association of New York or send a check or money order to the Glenville Police Benevolent Association, PO Box 2515, or through the PBA website at Glenville PBA.org.

The campaign will culminate with a pasta dinner fundraiser on Dec. 5