As BDSRA Foundation announced its winner of the International Batten Disease Awareness Day T-Shirt Design Contest on May 10th, Kris Bonagofsky was outside her home in the state of Washington doing yard work.
Bonagofsky, a Batten grandmother to Amelia (CLN1), received a FaceTime call from her daughter, Jennifer, Amelia’s mother, informing her she had won the contest, putting Bonagofsky in denial. Bonagofsky hadn’t seen two emails from BDSRA at that point revealing her as the winner.
After Jennifer showed her mother proof of her victory with a picture of BDSRA’s Facebook post, both surprise, and joy set in.
Kris Bonagofsky pictured in this year’s International Batten Disease Awareness Day T-shirt featuring her design (photo provided by Bonagofsky).
“I’m not on the computer or on the phone a lot,” Bonagofsky said. “I was really surprised that I had won.”
The design consisted of a butterfly alongside the words “Love, Hope, Cure”, a common theme of BDSRA’s International Batten Disease Awareness Day T-shirts in past years. Bonagofsky drew the design with a black felt pen, which ran out of ink before she could finish.
“The day I was trying to draw that little butterfly, I kept having a hard time with the wings,” Bonagofsky said. “So, I thought, ‘OK, I’ll just try one more time.’ And as I was doing it that last time, my felt pen ran out of ink, so I didn’t get to color the whole little butterfly body in.”
Despite Bonagofsky’s doubts, her design was selected as one of three finalists and voted the winner by the community. The butterfly design was inspired by a family activity where Jennifer and Philip, Amelia’s parents, bring home a few sets of caterpillars and release them into the backyard once they’ve grown and developed into butterflies.
A butterfly lands on Amelia Palermo (photo provided by Jennifer Palermo).
“Lots of times, the little butterflies will come and land right on Amelia,” Bonagofsky said. “I think butterflies also have a special meaning – strength, hope, faith, bravery…so that’s really special to us.”
Bonagofsky said she and her family typically spend International Batten Disease Awareness Day walking with family and friends at Frontier Park, gathering balloons and signs and placing them on Amelia’s wheelchair. She also uses her love of drawing to paint rocks and hide them around parks and trails to raise awareness for Batten disease.
Her winning T-shirt design, which motivated some of her friends to purchase their own, adds extra special meaning for the family this year as they continue to foster memories along their Batten journey together.
The family believes Amelia is the lone CLN1-affected child in the state of Washington.
Whether it’s painting rocks, sharing BDSRA’s posts, posting photos on social media, or supporting fellow Batten families, nothing will stop Bonagofsky and her family’s relentlessness when it comes to advocating and raising awareness for Amelia and Batten disease.
“I’m never going to stop doing that. It’s my way of keeping her in everybody’s thoughts,” Bonagofsky said regarding posting and sharing photos. “Each day is a special day because you just never know when they may be gone.”
