Many Facebook connections provide a quick diversion or fun way to stay in touch. Sometimes the social network makes a connection that does more — by improving someone’s life.
A mother in Istanbul joined a Facebook group for parents of children with tuberous sclerosis complex, a rare disease caused by a genetic mutation and marked by noncancerous tumors that grow throughout the body. She was looking for a way to help her 5-year-old daughter, Mia, who suffered from seizures related to TSC.
The mother, Micheale Kovalkovic wound up connecting with Jennifer Failla of Central Square, whose daughter Arianna has TSC. Arianna underwent MRI-guided thermal laser ablation last fall at Upstate. Her parents saw steady progress afterward with her behavior and cognitive abilities.
Kovalkovic learned more about the minimally-invasive ablation procedure. It allows doctors to insert a small laser into the brain and use a burst of heat to eradicate brain tumors or the epilepsy focus. Because it does not require the skull to be cut opened, or radiation therapy, which can damage surrounding tissue, ablation is safer for patients and reduces complications and recovery time.
Would it work for Mia?
Kovalkovic sent an email inquiry to Zulma Tovar-Spinoza, MD and received a quick response from the director of pediatric neurosurgeon at Upstate Golisano Children’s Hospital.
“Upstate is one of the pioneers and one of the few centers in the world that is using this technique for patients with brain tumors and epilepsy,” she says, explaining how patients wear frames on their heads so precise measurements can be taken before they are wheeled into the MRI suite for maganetic resonance imaging and the placement of a thin fiber optic applicator.
“The beauty of this technology is that you can actually see on the monitor the change of colors and temperature of the area that you are ablating,” Tovar-Spinoza explains. “It’s so precise. You know that are you preserving areas of the brain where you want to preserve function.”
The Kovalkovics came to Syracuse last March for the first phase of treatment from Tovar-Spinoza and her pediatric neurology colleague, Yaman Eksioglu, MD, PhD, a native of Turkey who put the family at ease. The family returned in August for the second phase and plans to come back once more this winter.
Tuberous sclerosis was detected in utero, when Micheale Kovalkovic was in her third trimester. Twice during Mia’s infancy, Micheale and Ivan Kovalkovic brought their daughter to a New York City hospital for surgery; twice, the surgeries were cancelled when the baby had a reaction to anesthesia. They began exploring options. Soon, Mia was enrolled in a special school in Turkey where she received intensive therapy seven days a week but remained nonverbal.
“We wanted to do whatever it took to get her well,” says her father, Ivan Kovalkovic, a business executive who left his job to concentrate on his family during Mia’s medical treatment.
When they are in Syracuse, the family resides at the Ronald McDonald House, 1100 E. Genesee St. “It’s like a 6-star hotel, luxurious with fine food and an enormously helpful staff,” he says.
Since her first procedure, Mia sleeps better and eats better. And while they remain hopeful Mia will speak some day, Ivan and Micheale are grateful for the elimination of most of their daughter’s seizures.
Syracuse Media Group coverage of Arianna Failla surgery