The aunt of an infant who passed away from the "worst disease you never heard of" in April is hoping to turn some space at the city's Sancturetum into a butterfly memorial garden to honor young loved ones that have died.
With City Council's expected approval Thursday, Stow resident Nici Hefflefinger wants to redevelop a vacant and overgrown area next to the Akron-General Wellness Pathway behind City Hall.
The plan was devised after Hefflefinger , to Junctional Epidermolysis Bullosa — Herlitz (EB), a rare genetic disorder that causes blistering to the skin.
Babies with this disorder were known as butterfly children, Quinn's aunt said.
"I was on the pursuit to find something to do for my sister and her husband in the community to honor my niece," she said. "In that process I realized that there really wasn't anything that wasn't in proximity to a cemetery."
Hefflefinger said she wants to create and maintain the garden and make it a place for anyone whose had a child or someone very young die.
"I want it to be a place of remembrance ... a space that can be used for solitude, a serene atmosphere. It'll be a place people in the community can go and remember and those who have not lost anyone will still enjoy the space," she said.
The property will continue to be owned by the city, but Hefflefinger hopes to maintain the area with a group of volunteers.
"If I take over this space, it’s not just a temporary concept, I want to endure this project for foreseeable future," she said. "I want to establish a board of volunteers to keep up on it on a yearly basis."
The Design, Cost
Hefflefinger expects the project to cost about $50,000. She envisions cleaning up the current gardens, adding concrete walkways and seating, adding more flowers and shrubs, putting in a water feature and including butterfly art sculptures from local artists.
If approved by council Thursday, Hefflefinger wants to create a non-profit and start fundraising soon.
"To make this plan a reality, several things need to be put in place and I can't do it alone," Hefflefinger said. She added that Quinn's mother and father, who are members of Holy Family, have already heard from parishioners who would like to get involved.
"I'd like to get members of the community and businesses involved too," she said.
In addition to fundraising, Hefflefinger would like to sell plaques with messages and names of loved ones on them. They would be featured as focal points in the garden in the shape of butterflies.
If fundraising goes well, the garden should start to shape in the spring of 2013.
"It's truly an inspirational story," said Councilman John Pribonic. "I commend [Hefflefinger] for making this a positive and I appreciate the efforts."
Hefflefinger, who is a friend of .
"I was really excited when Nici approached me," he said. "I would hope when this thing gets going, a lot of residents with children and infants that have passed away many years ago would seek to participate in this."