T-Shirt Design Contest Introduces Batten Disease To Local Community

Eight-year-old Kennedy Reed’s simple love for drawing and coloring has evolved beyond just the joy it brings her; it has impacted an entire local community through Batten disease awareness.

Kennedy’s “Buzz Off Batten” drawing was voted the winner of this year’s International Batten Disease Awareness Day T-Shirt Design Contest — sparking interest and calls to action from residents throughout the central Ohio communities of Cardington, Fulton, and Mount Gilead.

“I actually already have some people asking me what else they can do to bring awareness to it,” Kennedy’s mother, Kelli, said. “I’m hoping then they take this knowledge, and they pass it on to the people that we don’t talk to, and more and more people start to understand how horrible this disease is.”

Like most outside of the Batten community, Kennedy and her family consisting of her mother Kelli, father Brian, and brother Kaiden, had never heard of the ultra-rare disease. That was until Linda Barkhurst, Kelli’s mother, and Kennedy’s grandmother, was hired by BDSRA as the foundation’s office manager in November 2021.

Throughout Linda’s time at BDSRA, the Reed family grew more aware of Batten disease and the long and difficult path traveled by Batten families. As Linda learned more about families within the Batten community, Kennedy was inspired to craft cards for Batten children, including birthday cards and get-well-soon cards.

“She likes to make people feel good,” Kelli said.

After crafting her T-shirt design, Kennedy felt confident with her chances of winning and once she was named one of three finalists, she told her second-grade friends to vote for her. Word of the contest, Kennedy’s design, and Batten disease spread further, thanks to word of mouth at the hair salon where Kelli works in Mount Gilead.

“My mom did all of it,” Kennedy said when asked about encouraging the community to vote for her design while pointing to her mother and giggling.

Kelli assured that it was a team effort.

“She goes to the salon with me all the time and my clients love talking to her,” Kelli said. “I was telling them about (the T-shirt design contest), and then it really did get the subject started…all of them were like, ‘Well, what is that Batten disease?’

“It’s one of the things that you tell everybody and they’re just like, “This is horrible. We didn’t even know about this.”

Awareness leads to advocacy, and advocacy paves the path to change.

This instance alone has inspired an employee of a local restaurant where the Reed family regularly dines to help organize a walk together on International Batten Disease Awareness Day on June 9th and raise funds and awareness. Multiple others have come forward to ask how they can contribute.

“Hopefully, some change can come, they can do research, and find out how to stop this because this (disease) is horrible. No parents should lose their child, especially with all the issues they have leading up to it. It’s just so sad,” Kelli said.

The power of advocacy is on full display in central Ohio. This year’s Batten awareness T-shirt featuring Kennedy’s design will be worn by fellow advocates across the country and overseas — perhaps prompting more introductions to Batten disease that will be instrumental in developing more treatments and a cure.

“I’m so proud of her,” Kelli said of Kennedy. “I don’t think she knows or understands what a big deal this is and to see that it’s hopefully bringing more awareness to its people.”

To order this year’s International Batten Disease Awareness T-shirt featuring Kennedy’s design, order one by registering for the virtual 5K and creating your fundraising page or by purchasing one separately by Tuesday, May 7. Click here to get started.