A butterfly has joined the names of Summer and Autumn lanes among Hicksville street signs that Amanda Kuck passed every time she left her home before succumbing to childhood cancer.
Her mother, Kimberly Kuck, 38, said Saturday that butterflies were a symbol for her daughter because they were “graceful and confident.”
“She was always talking about butterflies,” Kuck said.
On Saturday, the Town of Oyster Bay dedicated Summer Lane in her daughter's honor with a sign reading “in memory of Amanda ‘Mandy’ Kuck.” Beside the name is an image of white wings joined by a yellow ribbon on a purple background.
Since their daughter’s death in 2016 from diffuse intrinsic pontine glioma, an incurable pediatric brain tumor, Kimberly and Thomas have raised funds for research for the disease. Three years ago, the couple started Mandy’s Mark, the New York chapter of The Cure Starts Here, an Ohio-based nonprofit that focuses on cancers such as DIPG. The chapter held its third annual golf outing and fundraiser on Friday.
Oyster Bay Town Supervisor Joseph Saladino, speaking at the dedication, praised the family for its work in the “mission to win the fight against cancer so other families … will never have to endure your heartbreak.”
In 2015, 4-year-old Amanda began suffering from what doctors originally thought were allergies, the parents said. But when their daughter began having trouble with eye movement and balance doctors ordered a CAT scan.
“They said she had a mass on her brain,” Kimberly Kuck said. “I said, ‘Okay so what do we do now? Do we operate?’ and they said, ‘No, it’s inoperable’.”
The Kucks said they felt the walls close in on them. They didn’t want to tell their daughter or her older brother Ben that she was dying.
“She knew she had a ‘boo boo’ on her brain,” the mother said.
Thomas Kuck, 37, a maintenance director at a high school, said they wanted to give their children as normal a childhood as possible. “Our job is to worry about you guys, your job is to be a kid,” he said he told them.
After undergoing a regimen of radiation treatments and oral chemotherapy doctors told them she didn’t have much time left. Amanda was incapacitated and living on a feeding tube in their home, but the family assumed she could still hear them and so when they would play Monopoly, someone would play her piece.
Amanda died on Jan. 25, 2016 — four days after her fifth birthday.
Kimberly Kuck said the street dedication to their daughter means “she won’t be forgotten.” The couple has three other children in addition to Amanda but, she said, “I will always have four children.”