GILBERTSVILLE — Students at Gilbertsville-Mount Upton Central School this week left their mark on a car that will be smashed for a cause.
Using paints from Golden Artist Colors, based in New Berlin, the students each added a colorful handprint to the exterior of the car, a 2000 Toyota Camry formerly owned by Ashley Hughes, an art teacher at the school.
“Do you think it’s OK to go home and paint Mom or Dad or Grandma’s car?” Hughes asked her class of first-graders, who giggled at the thought.
Before taking the kids outside, Hughes sat them down for a story.
The car belonged to her late mother, Cathy, she said. Her parents gave it to her when she was a senior in high school, and after 10 years, she “drove it into the ground.”
“I was driving this car when you were babies and I was driving this car before you were born,” Hughes told the class.
She said she brought the car to Certified Auto Outlet in Oneonta to trade it in, and one of the employees, Joey Utter, offered to buy it to use at a local demolition derby.
“It’s kind of like real-life bumper cars,” Hughes explained.
The fourth annual Sanfilippo Smash is held in honor of Mea Stoecklin and Martin Gulley, two local children diagnosed with Sanfilippo syndrome. It will be held Saturday, Oct. 5, at the Otsego County Fairgrounds in Morris. All proceeds benefit the Team Sanfilippo Foundation, an international nonprofit medical research foundation.
Hughes showed the class a photo of Mea, who died in her sleep Sept. 24 at age 8.
“By painting a demolition derby car today, you’re going to help Mea,” Hughes said.
Sanfilippo syndrome is the most common form of mucopolysaccharidosis — an inherited enzyme deficiency — known as MPS III. Characterized by delayed physical and mental development, Sanfilippo syndrome has no cure and no approved treatment, according to the National MPS Society.
One in 70,000 newborns is born with the disease, which is named for Dr. Sylvester Sanfilippo, one of the first U.S. doctors to describe the condition in 1963.
Jeremy Gulley, Martin’s father, said a few of his friends organized a fundraiser when Martin was diagnosed in 2015. The following year, they hosted the first Sanfilippo Smash.
“They say do what you know,” he said. “I’m not a very good T-shirt salesman, but I know derbying.”
“We initially started to fundraise for Martin, but then we thought ‘we can’t leave Mea out,’” Gulley continued.
Mea and Martin, now 9, were diagnosed with the disease one month apart, according to Gulley. He said he was acquainted with Mea’s father, Nate Hitchcock, through the derby community and the two decided to team up.
“We’re raising money for a viable treatment or a cure,” Gulley said. “Something that takes the pain away and increases the quality of life — that’s what we’re pushing for.”
When Martin was 2 or 3, he had a vocabulary of about 100 words, Gulley said, “but over the past five years, we’ve slowly watched the disease rob him of his ability to talk, to eat on his own and to walk.”
“To watch that day by day was extremely tough on me, his mother and his sisters, who have been very active caretakers for him,” he continued. “You really learn to appreciate every second, every day that you have with him.”
The family has taken several trips to the beach, attended baseball games, flown to Atlanta, Georgia, and visited Walt Disney World through the Make-a-Wish Foundation, Gulley said.
“Instead of putting things off, we’ve really tried to make memories,” he said. “We live a strange life. It’s spontaneous — just jump in the truck and go.”
The family resides in Long Eddy; Gulley said he and his wife, Jodi, are natives of New Berlin.
“Morris has always been my hometown track,” he said. “It just made sense to have it there.”
This year’s event will feature more than 400 cars and a fireworks display at dusk. Gates open at 6 a.m. and the derby starts at noon. Admission is $15 and there is no fee to enter the derby.
For more information or to donate, visit teamsanfilippo.org
Sarah Eames, staff writer, can be reached at firstname.lastname@example.org or 607-441-7213. Follow her @DS_SarahE on Twitter.