COLUMBIANA, Ohio (WKBN) – This weekend at Firestone Park in Columbiana, there’s a carnival going on, but this carnival has a greater purpose in finding a cure for kids whose hope lies in research.
Sophia Angiuli is six years old, just two years ago she was diagnosed with epilepsy. Then, a year later, leukodystrophy.
Her condition is so rare, she’s only 1 of 16 in the world to have it, but she does not let that dim her light, according to her parents, Stephanie and Rodney Kale.
“She is so loving. She’s got the best smile and laugh, and she’s so sweet,” Stephanie said.
What was going to be Sophia’s carnival-themed sixth birthday party has become a fundraising event that the entire community can join in on.
“Once we got all the support from the community and all that it quickly went from just a regular birthday party to what we’ve got today,” Rodney said.
And what they have now is Carnival for a Cure, and it’s happening this weekend at Firestone Park in Columbiana.
Entire families can come and enjoy pony rides, a raffle, food trucks and a bounce house, just to name a few. All of it is raising money for kids like Sophia.
“The money we raise this year is gonna go toward the Epilepsy Foundation of America, and then next year, we’re probably going to donate money to the research project she’s apart of for her leukodystrophy,” Stephanie said.
The event isn’t until this Sunday, but already the charity has received $20,000 in donations — a number Sophia’s mother could have never imagine.
“My original goal was $5,000, and we increased it four times now, and it’s not just even the money. It’s just the support from everyone in the community and seeing people get involved and spreading awareness,” she said.
Stephanie says research for conditions like Sophia’s rely on charities like Carnival for a Cure.
“Funding for treatment, it’s not something the pharmaceutical companies wanna do, so these parent-led organizations have to take the reigns to try to find a cure for our children,” she said.
And take the reigns she did, which they hope inspires other families like theirs.
“When something like this happens to your child, it’d be really easy and completely understandable to let it overwhelm you and just focus on the negative, and she’s chosen to bring good out of a negative situation, not just good but something that hopefully helps another family face this down the road,” Rodney said.
“It’s been a rollercoaster of emotions, but she has made me a better person,” Stephanie said. “I think it’s allowed me to really have purpose for my life.”
The Carnival for a Cure is this Sunday, from 1 to 4 p.m. at Pavilion 4 at Firestone Park.
For adults, the cost is five dollars, kids three and up it’s $20, but that includes all the games, pony rides and bounce house. Plus, there will be raffles and a food truck.
All of the money will go to the Epilepsy Research Foundation.