Dancing for treatment
65 Roses Ball celebrates Aubrey Sparks, raises money to fight cystic fibrosis
TUPPER LAKE — Everyone was dressed up, the ceiling of the Wild Center’s Big Wolf Great Hall was lit up purple, and dozens of family and friends waited for 13-year-old Aubrey Sparks to enter the room.
“Stop,” said her mother, Meaghan.
Meaghan wanted her daughter to drink it all in, to take a moment to understand that all the people standing around them were there to support and love her, Aubrey.
They will be there again this Saturday for the third annual 65 Roses Ball, a family dance night to support the Cystic Fibrosis Foundation.
Aubrey was born with cystic fibrosis, which effects her breathing, digestion and her immune system. Having CF is a constant battle for Aubrey, involving consistent treatment, occasional visits to the hospital and daily pain.
Aubrey does not let that slow her down, through. She plays volleyball and basketball, sings in chorus and made the National Junior Honor Society. She plans to the Fashion Institute of Technology in New York City when she graduates from high school.
Around 30,000 people in the U.S. have CF, and two more of them will be at the 65 Roses Ball this weekend: Amber Parrotte, a 27-year-old teacher from Saranac Lake, and Reese Brown, a 5-year-old from Plattsburgh. Meaghan said Amber is inspiring for Aubrey, to see someone in their 20s who has battled CF for so long.
However, people who have CF have to keep their distance from each other, staying at least 6 feet away to avoid passing bacteria.
“It’s hard,” Meaghan said. “They get to know each other, but they can’t hug, they can’t touch.”
Aubrey does not get to meet many other people with CF, so talking and learning from Amber is a unique experience.
The name “65 Roses” comes from a common phrase used to pronounce cystic fibrosis, so the rose has become a symbol of CF. On Saturday the support from everyone attending will be symbolized by an actual collection of 65 roses from Dorie Lalonde, on display throughout the atrium.
Meaghan wanted to thank her friends who helped her organize the ball: Darcy Robillard, Lisa Reed, Tammie Lalonde, Tenielle Gonzalez, Courtney Manhard, Ruth Burnett, Marci Bencze, Jessica Stevens and Brittany Lapierre, as well as her sisters Brooke Hample and Tracy Southwick.
“I’m telling you, I could not do it without these ladies,” Meaghan said. “They are phenomenal. They give a lot of their time and their own money.”
Robillard said everything that was needed for the event was taken care of by people in the community.
Max Nason of MX Productions in Vermontville will DJ the event, Stacked Graphics of Tupper Lake is making T-shirts, and Kaylee Rabideau, who underwent brain surgery in March, will do Aubrey’s makeup for the event. Hors d’oeuvres, deserts and “mocktails” will be served by the honors students and the varsity softball team.
“I think it’s across the board,” Meaghan said. “People in Tupper Lake are generous. It’s just how it goes.”
In April dozens of people turned out to Raquette River Brewing for a packed event raising money for Aubrey’s family.
“I honestly will tell you that I kind of hesitated because that just happened in April,” Meaghan said.
However, the money raised with the 65 Roses Ball will go to the CF Foundation.
Between all the events and online donations last year, Meaghan said they raised $13,000.
Every year Aubrey brings a group of around 100 to the Great Strides walk in Plattsburgh to raise money for the CF Foundation. Meaghan said though their team comes the farthest, it is usually one of the biggest, made up of family, friends and co-workers from Clifton-Fine to Syracuse.
“You hear so many of the moms say how hard it is because they can’t get people to walk with them,” Meaghan said. “I sometimes feel kind of guilty because we have never had that experience. We have been so honestly blessed from the beginning.”
The next Great Strides walk is Sunday, June 2.
65 Roses Ball
Aubrey has had a couple of rough days this week, Meaghan said. She’s been fairly sick and hopes she will feel better in time for the ball. She looks forward to the event each year, and Meaghan said she needs a night of fun, even if she doesn’t feel the best.
Meaghan remembers a moment from last year when Meaghan and her dad, Arthur, danced to Bob Carlisle’s “Butterfly Kisses.” She said Arthur usually “stays in the background,” so seeing him have that special moment with Aubrey left few dry eyes in the place.
The ball started off as a father-daughter dance, but Meaghan said she wanted to include everyone, so it’s become more of a “loved ones” dance.
Meaghan said Aubrey’s brothers, aged 8 and 22, are both incredible helpers, hugging Aubrey on hard days, raising money with events and providing emotional support. They, too, will all be at the Wild Center Saturday to dance and have fun with Aubrey.