To talk with Ella Romig today is like talking with a typical 11-year-old girl. She’ll list all the things she likes to do — volleyball, reading, dancing, singing and more.
It wasn’t more than a year ago, though, that Ella could only imagine doing some of those things. She suffered from epilepsy brought on by tuberous sclerosis, a rare genetic disease that can cause benign tumors in the brain.
But thanks to a surgical procedure she underwent in Cleveland last September, the West Lafayette girl can enjoy a lifestyle free of seizures.
This past weekend, she and her family attended a reunion at Cleveland Clinic for patients who underwent surgical treatment for epilepsy and came out on the other side without seizures. Ella said she was looking forward to meeting more kids like her and playing the games she knew they would have for her.
The difference in her daughter is dramatic, her mother, Stephanie Romig, said.
“She was always, believe it or not, a bit shy, not very outgoing. And always two to three sizes smaller than her class,” Romig said.
Ella had a constant tremor that made physical activity difficult, and she had been medicated since she was 6 months old. She didn’t really dance or sing, and she didn’t throw a softball.
“After her surgery, she sings all the time,” her mother said.
Before the surgery, learning disabilities associated with her epilepsy made reading and math difficult. Back at school after her surgery, Ella read the most books in her fifth-grade class — 50.
“Mrs. Braile was very excited,” Romig said, referring to one of Ella’s teachers, “because where (Ella) was more of a little wallflower, after her surgery she was much more dynamic.”
Months of testing
Ella and her family went to Cleveland Clinic originally just for a consult. When they found out about the tuberous sclerosis and that surgery was an option, the Romig family began to spend a lot more time in Ohio.
There were months of testing before Ella was cleared as a candidate for surgery. On Sept. 5, Ella underwent the first part of her surgery. She stayed in the hospital for two weeks.
A tumor in the right temporal area caused the seizures on the left side of Ella’s body, said Dr. Elia Pestana Knight, who is with Cleveland Clinic’s Epilepsy Center.
The tumor was too far in the brain to be caught by an MRI scan. Extratemporal surgery identified the point of the focal seizures, then corrected it.
The surgeon, Dr. Jorge Alvaro Gonzalez-Martinez, made Romig’s family feel at ease, Romig said. Ella and her mother laughed as they remembered what Gonzalez-Martinez said when Romig worried about her daughter’s operation.
” ‘I treat you like my daughter,’ ” Ella said, imitating her surgeon’s soft, low voice.
“It sounds really silly the way we’re saying it, but he put my husband’s mind at ease too, which isn’t easy,” her mother said.
The Cleveland Clinic staff gave Ella a doll while in the hospital, wrapping its head in the same white gauze that covered Ella’s head.
“We had great support from family and friends as well,” Romig said.
Romig said her mom’s church, Deer Creek Presbyterian, raised a couple thousand dollars for the family at its annual free will offering breakfast.
Before the surgery, Knight said, Ella’s behavior was poorly controlled. Now she’s a mellower, happier child: “When she came for the six-month checkup, she was a completely different child.”
For Ella, the days of testing her health aren’t over. , as she’ll always have to monitor her tuberous sclerosis. But she can enjoy activities that for years were beyond her reach.
“The fun thing was, before my surgery, I couldn’t ice skate,” Ella said. “But when I went to my grandpa’s house in Pennsylvania, I could ice skate with my uncle.”
Source: Lafayette Journal & Courier