Runners lace up their shoes, stretch their legs, and pace themselves for the race they are about to run. At the annual Run the Maple 5K, those runners might spend half an hour running through the tall trees and gorgeous landscape of the Maple Retreat. Race organizer Katie Burch is running a different race — a race against time to find a cure for her son, Sawyer. Sawyer’s Race for Research (SRR) works to find and fund a cure for trifunctional protein deficiency (TFP), a rare metabolic disorder documented fewer than 100 times worldwide. 

Sawyer was diagnosed with TFP in 2021. The disease prevents the body from converting certain fats into energy, so it tries to break down muscles for energy instead. Other symptoms include heart failure, blindness, and neuropathy, all of which Sawyer suffers from. As he gets older, his disability will progress, and no one has lived past the age of 30. When Burch went to the TFP world specialist in Pittsburgh, Dr. Gerry Vockley, she found that all of his funding had been cut in response to COVID-19. The specialist had two drugs in studies and was making progress in gene replacement therapy, but he no longer had the funds to continue his work. Burch resolved to do something about that. 

“I said, ‘money is what’s holding up my kid’s possibility of a cure?’” Burch said. “As a mother, I just couldn’t stand that.” 

SRR began in 2021 as a 5K hosted by college students at Burch’s church. The course ran through her neighborhood and started and stopped at her house. That first race was a success with around 50 participants, but Burch made it her mission to network with the community and share their story. 

“My goal was to make this 5K one of the biggest races,” Burch said. “I want this to be a staple race in South Central Kentucky.”

That hard work has paid off in a big way. Run the Maple 2024 hosted 215 adults and kids in the 5K, the accompanying mile walk, and the virtual run and raised over $40,000 for research. In the past four years, the race and SSR’s Tee Off for TFP fundraiser have raised around $350,000, all of which goes directly to Vockley’s research. 

“One hundred percent of the proceeds go straight to research there — nothing else,” Burch said. 

Because of TFP’s rarity, Sawyer’s Race for Research is one of the only organizations working for its cause. Burch said it is primarily their donations that have kept Vockley’s research going. Burch’s passion has spread as well. This year, two other families held their own 5Ks for TFP — one in Wisconsin and one in England. That isn’t the only good news in the race for a cure. 

“This year is even more exciting because we got the news in September at Sawyer’s check-up with his specialist that he has gene-replaced mice,” Burch said. “This is a cure for Sawyer. So we are on the cusp of changing the world and being able to eradicate this terrible disorder.” 

One success isn’t the end of the journey, however. The process has to be followed again with exact specifications, and much testing remains. While Vockley is working toward getting grants and funding back, SSR is there to fill the gap. 

It hasn’t been easy keeping the nonprofit running. With no fundraising experience, Burch had to start from scratch. She overcame a lot of anxiety about being honest with people and asking for donations, but others have encouraged her not to worry. Most people want to help — they just may not know where. Burch said the response has been amazing. 

“I have been overwhelmed with the kindness of strangers in Bowling Green, and I think that’s a testament to the people of Bowling Green as well,” Burch said. “I just try [to] be honest — we’re parents just fighting for a cure.” 

It is a learning process, and the family has made mistakes, but Burch said they will keep trying to share Sawyer’s story as best they can. Even if someone cannot give, Burch covets prayers of protection as the fight for a cure continues. 

The real superhero through all this is Sawyer himself. Doctors diagnosed him late at 4 years old, and Burch said they didn’t know how he survived without treatment. Sawyer is still defying the odds, and his genetics have helped the path toward a cure. Even more incredibly, his spirit has never wavered. He is an inspiration to anyone going through long-term illness. 

“He just has the best attitude despite everything he has to go through, and I’m just constantly amazed by his strength,” Burch said. “God has protected him thus far, and I think Sawyer is going to do great things for this whole community.” GN