One Lewiston family is inviting community members to help them raise awareness for the rare genetic disorder that took their son’s life.
“If we can raise awareness, maybe we can help somebody,” said Kelsey Bobka, the mother of Baine Bobka, who passed away in November of 2017. Baine was 7 when he died from ornithine transcarbamylase deficiency, or OTC.
After Baine’s death, Bobka and her family wanted to do something to honor his memory and help others learn about OTC deficiency. They hoped the efforts would prevent other families from losing a loved one to the disease.
With the help of Bobka’s cousin Jordan Pulsipher, they planned a glowstick 5K to raise money and awareness. The first Bring Light to Baine’s Legacy 5K was last year.
“We were expecting 40 or 50 people and we had about 400 people come out, and we were able to raise $18,000 to go towards research for OTC deficiency,” Pulsipher said.
The money raised from the 5K goes to Baine’s Legacy Foundation and is used for things like OTC research or getting people tested for the disorder, Pulsipher said.
According to Bobka, the family is also working on creating a presentation for medical professionals to help them learn more about what the disease looks like so it is more likely to be diagnosed.
“We were unlucky and we lost a child. But if you catch it in time, there are things to help,” Bobka said.
Bobka said she hopes the event will encourage people to educate themselves about the disorder and then to share the information with their family and friends.
She also said the event has helped her see how much good there is in the world.
“It restores your faith in humanity a little bit,” Bobka said. “I never thought the community would come together in this way.”
The 5K will be at 7:30 p.m. Saturday at 180 E. Center St., Lewiston. For more information and to register, visit events.baineslegacy.com. Beyond a 5K the event will also include a DJ, music, dancing and fireworks.