Epilepsy Surgery Reconnects Adriel & RJ with Fullest Potential
In suburban Chicago, the Navarette and Walters families once shared something concerning in common: young boys who experienced frequent, unpredictable seizures that interrupted life as they knew it.
For Adriel Navarette, the seizures began when he was just a newborn as a result of hemimegelencephaly, a rare neurological disorder in which one side of the brain is larger than the other.
RJ Walters was a typical four-year-old when he was diagnosed with a progressive neurological disease with severe seizures, known as Rasmussen’s encephalitis.
Though their diagnoses varied, both boys experienced severe, potentially life-threatening seizures. Their parents shared a sense of boundless determination to find a cure for their sons’ forms of epilepsy, with a will to travel around the world if need be.
‘Best place to receive care’
Fortunately, a curative treatment was just a few miles from home at Lurie Children’s.
As a pediatric neurosurgeon and researcher, Dr. Sandi Lam is devoted to discovering curative treatments for life-threatening neurological disorders affecting kids like Adriel and RJ.
Using a minimally invasive technique, Dr. Lam has perfected a procedure known as a hemispherotomy to cure various forms of epilepsy. In the procedure, half a patient’s brain — the one where the seizures originate – is disconnected or removed, so that the seizures cannot propagate to the other side of the brain.
After their search led them to Lurie Children’s, the Walters and Navarette families met with Dr. Lam to discuss the procedure.
“When I first met Dr. Lam, she explained to us that she thought it would be the best thing for him, but no matter that it would be our choice,” Adriel’s mother, Lilianna, said.
As Adriel’s seizures continued to worsen, his parents Lilianna and Ben decided to pursue the surgery to prevent brain damage. He underwent the procedure at three months old.
RJ’s parents grew increasingly worried as his seizures, which worsened with time, affected his developmental progress and altered his personality as a young child.
“Lurie Children's is the best place to receive care as a kid,” RJ’s mother, Jamilah, said. “I immediately went there, did the research, found Dr. Lam, then I continued to find all her articles and look at all her credentialing. Immediately, she had my family's heart.”
Developing discoveries together
For Dr. Lam, each hemisphertectomy presents myriad opportunities to advance knowledge of epilepsy. At Lurie Children’s, she invites colleagues from all over the world to learn this surgery technique so they can bring the knowledge back to their home countries.
“We have to try hard to find opportunities to develop these discoveries and insights together,” Dr. Lam said.
Dr. Michael DeCuypere, a fellow neurosurgeon at Lurie Children’s, also supports the effort. Dr. DeCuypere collaborates with Dr. Lam to better understand pediatric epilepsy tissue, using first-of-its-kind visualization of immune cells from surgery. This personalized snapshot of each patient's brain environment helps physicians choose medicines that control the development of epilepsy. Through her health services research, Dr. Lam also aims to study and address healthcare disparities and to address barriers in access to pediatric epilepsy care. Only 1 in 3 kids who need epilepsy surgery ever receive a powerful procedure that may cure them. By studying patterns of healthcare across the US, we can identify the barriers and aim to promote health equity for all children.
Since the surgery, both Adriel and RJ have remained seizure-free. Adriel is more energetic and engaged with his family, and RJ loves playing with his younger sister, practicing taekwondo and learning adaptive basketball.
Thanks to Dr. Lam’s research, supported by philanthropy, Navarette and Walters families see a world of possibility for their sons, now 15 months and 8 years old, respectively.
“This outcome was made possible through funding for research,” RJ’s father, Randall, said. “Our family has reconnected tremendously after this surgery. We feel like we have our son back.”
About Lurie Children’s Epilepsy Center
The nationally-prominent Lurie Children’s Epilepsy Center boasts an extensive range of services, providing the highest level care for children with various forms of epilepsy. Our team of specialists provides comprehensive, multidisciplinary care for children with epilepsy, complete evaluation services, specialized epilepsy clinics and epilepsy surgery services. Learn more.
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