It doesn’t necessarily take a lot of courage to compete on the bowling lanes.
But for Donegal’s Violet Bacci, it took a lot of courage just to get there.
Her perseverance through a years-long ordeal that eventually included removing part of her brain earned her the Courageous Athlete Award from the Susquehanna Valley Chapter of the Pennsylvania Sports Hall of Fame, which she received during induction ceremonies in May.
Bacci’s journey began on May 3, 2014, when she was just 5 years old. While on a spaceship simulator-type ride at Dutch Wonderland, she had a seizure. Her parents, Matt and Jennifer, had no idea what happened. At the end of the ride, little Violet was unresponsive and remained so for a few hours.
“It was a very scary day,” Jennifer wrote in a Facebook post.
Young Violet began having episodes where she’d look at her mother and say something that made absolutely no sense. Jennifer called the neurologist, who said the episodes were likely complex partial seizures.
Ultimately, Violet was diagnosed with epilepsy. She started daily medication.
“We figured that would be the end of that, but we were so, so wrong,” her mother said.
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Challenges grow
Violet’s diagnosis didn’t prepare the Bacci family for what was to come as the seizure frequency multiplied. Numerous medications failed to stop the seizures — which grew to as many as 100 a day.
“I remember having to take dozens of pills even though none of them worked,” Violet recalled in a recent email. “It was terrible, especially when I had to wear a helmet in the summer when I was still doing baton.”
Among the many difficult experiences of Violet’s early childhood was a 19-day stay at Children’s Hospital of Philadelphia in December 2015.
She had seizure after seizure, without returning to herself in between. She was given meds that were so strong she couldn’t even sit up.
“It was awful seeing her so drugged up,” Jennifer said.
Violet was back at CHOP in January 2016. She underwent an IEEG, where the neurosurgeon performed a craniotomy to open the skull and expose the brain. He placed what are known as “grid maps” on the left side of her brain, then put the skull back together and stitched up her head.
In the long run, surgery ended up being the best option. But leading up to that, Matt and Jennifer Bacci faced all kinds of difficult questions.
“I wish so badly that there was an easy solution, but there just isn’t,” her mother said. “The decisions we have had to make have not been easy or carelessly made. Having thousands and thousands of seizures has taken its toll on her brain.
“Having to make this decision for someone you love more than life itself is harder than you could ever imagine.”
They decided to proceed with the surgery, and when she was 8, doctors removed the part of Violet’s brain where they believed the seizures originated. The procedure took away half the vision in both eyes and left her with severe aphasia, which results from damage to areas of the brain that are responsible for language and impairs the expression and understanding of language, as well as reading and writing.
And the surgery did little to alleviate the seizures.
Violet had to continue dealing with them over the next three years. Among the resulting issues, she had to wear a helmet to protect her when she would fall to the ground during what are called “sudden drop seizures.”
By March 2018, Violet’s condition evolved with the onset of myoclonic seizures, which caused right-sided weakness. The new challenge required her to adapt to using her left hand for tasks she’d once performed with her right.
Despite the setbacks, Violet’s spirit remained unbroken.
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A new hope
The search for better treatment led the family to NYU Langone in New York City for a second opinion on responsive neurostimulation.
Extensive testing and the discovery that her language had remapped to the right side of her brain opened new possibilities. The decision to proceed with a hemispherectomy at Children’s Hospital of Philadelphia in January 2020 was a turning point, offering a 90% chance of seizure freedom.
The radical surgery would disconnect and remove the entire left hemisphere of her brain, which controls the right side of the body. It meant she would wake up from the surgery unable to move her right arm or leg.
That surgery, while presenting significant challenges, was a crucial step towards improving her quality of life.
In several months of inpatient rehab, Violet learned how to walk again, with the help of a leg brace, and also learned to become left-handed.
And amid all those trials came some great news: The surgery had worked.
Violet Bacci has not had any seizures in five years.
“It was frustrating because the seizures interrupted everything I did,” she said. “Not having seizures makes me feel happy and excited because I can have fun without worrying about having a seizure.”
Throughout her challenging journey, Violet eventually became involved in bowling.
“I joined the Saturday league at Clearview Lanes and had so much fun,” said Violet, who is now a junior at Donegal. “I wanted to join the bowling team once I got to high school. I love having friends on the team.”
Just competing could be considered an accomplishment. But she performed well enough to earn a spot in the Lancaster-Lebanon League girls tournament, qualifying 18th in 2024 and 12th out of a field of 42 last season. She averaged 176 to finish 51st out of 111 qualifiers at the Eastern Pennsylvania Regional Championships.
Violet, whose brother, Rowan, is also on the team, had a 160 average for the Indians last year. She has a high game of 230 and a high series of 570.
“My goal is to bowl a 600 series,” Violet said. “After high school, I want to get a job, get married, and have kids.”
At the Hall of Fame induction ceremonies earlier this year, Donegal bowling coach Paul Stubenrauch said, “Violet … embodies honesty, fairness and respect in all her interactions. Her unwavering commitment and dedication to the team and her teammates are evident in her constant efforts. … Violet’s qualities make her an invaluable member of our team and I am very fortunate to be her coach.”
In addition to bowling, she also participates in adaptive baseball and cheerabilities.
With all the things Violet Bacci has had to adapt to — in bowling as well as in life — it’s safe to say she’ll keep courageously striving to reach her goals.
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