Five-year-old Charlie had never had a seizure until November 2024. Just before Thanksgiving, his teacher began to notice awkward falls and moments when Charlie wasn’t himself. Sometimes, he seemed clumsy or would fall and hit his head. “It was strange, but we didn’t think it was an immediate health issue,” says Charlie’s dad. “But it escalated quickly.” 

The weekend before Thanksgiving, Charlie’s symptoms drastically increased. He began to lose consciousness for about five seconds at a time and, afterwards, felt dizzy and disoriented, temporarily unable to use his left hand.  

Charlie’s parents, Audrey and Chris, rushed their son to the emergency department near their home in Atlanta, GA. Charlie was admitted to the hospital, where after an EEG and MRI, he was diagnosed with epilepsy due to focal cortical dysplasia (FCD). FCD is a brain disorder in which cells in a specific area of the cortex, the brain’s outer layer, develop in a disorganized way, increasing the risk of seizures and interfering with functions such as movement, speech, memory, thinking and learning. 

Focal-onset seizures are one of the most common seizure types seen in FCD. This type of seizure starts in one place in the brain and can spread to other areas. Seizures may include twitching, jerking, shaking and – as in Charlie’s case – loss of balance and coordination.  

“It was a very clear diagnosis,” says Audrey, “but we still had so many unanswered questions.” 

Charlie was prescribed anti-seizure medication, the first line of treatment for epilepsy. Unfortunately, anti-seizure medicines often don’t help people with epilepsy that is caused by FCD. This is called having drug-resistant epilepsy, which proved to be the case for Charlie. 

“It quickly became clear the medication was not doing anything,” Chris remembers. “He was having up to 20 seizures every day, and they kept getting worse.” 

Searching for answers 

Soon after Thanksgiving, Charlie was readmitted to the family’s local hospital, where he spent eight days as doctors tried to get his seizures – nearly 25 each day – under control. His care team tried everything, including six different types of medication, some of which caused allergic reactions, and various combinations of medication. A combination of three different seizure medications finally reduced Charlie’s seizures to about 5 each day. “They told us that was the best they could do,” says Audrey.  

Once home, Audrey and Chris were constantly worried about Charlie getting hurt. He had seizures in the bathtub, was struggling at school and getting injured every time he fell.  

Audrey and Chris knew there had to be a better solution and began to look for new options for their son.  

Trusting CHOP’s team 

When Audrey and Chris learned about the Pediatric Epilepsy Program at Children’s Hospital of Philadelphia (CHOP), they scheduled a consult with Benjamin C. Kennedy, MD, Director of Epilepsy and Functional Neurosurgery. CHOP’s Neuroscience Center is one of the highest-volume epilepsy surgery centers in the country, offering the most advanced and highly innovative procedures to treat epilepsy.   

“We had already started wrapping our heads around the possibility of brain surgery,” says Audrey. “It sounded incredibly scary, but we knew that if Charlie was a good candidate, surgery could be curative.” 

In January 2025, Audrey and Chris flew to Philadelphia where they met with Dr. Kennedy and Sudha K. Kessler, MD, MSCE, a pediatric epilepsy specialist, Medical Director of CHOP’s Epilepsy Surgery Program and Program Director of the Pediatric Epilepsy Fellowship at CHOP.

“Dr. Kessler was such a reassuring presence,” says Audrey. “It was so helpful to have her experience and reassurance. Suddenly, somebody was helping us.”  

Dr. Kennedy and Dr. Kessler reviewed Charlie’s brain scans and explained the risks and benefits of surgery to Charlie’s parents. Although the origin of Charlie’s seizures was highly localized —making him a good candidate for surgery – they were originating from an area responsible for movement and sensation, putting him at risk for significant weakness and incoordination in his left hand and leg, as well as difficulty walking.

“It’s a scary area to operate on,” says Chris. “Charlie could lose all function in his left hand. We didn’t know what he would be like after surgery.” 

At CHOP, children with drug-resistant epilepsy are evaluated for surgery by a team of experts, who use medical history, exams, brain scans, seizure monitoring, and even psychological testing to find the best treatment plan. Charlie and his parents returned to CHOP in February for a series of tests, including a stereoelectroencephalography, which is a minimally invasive procedure during which doctors place electrodes on the brain to identify where seizures are starting. All test results indicated that Charlie was a good candidate for brain surgery.  

Performing surgery soon would also give Charlie the best chance at recovering any cognitive or developmental deficits the seizures had caused. 

“It was the toughest decision we’ve ever had to make,” says Chris. “But we had determined early on that these were the doctors we were going to listen to. They were our most trusted advisors guiding us through. We knew Charlie was in good hands.” 

Childhood restored

In April 2025, Charlie was admitted for surgery. “During the procedure, we used brain-mapping to electrically test and identify Charlie’s primary motor and sensory brain regions. That allowed us to approach the deep dysplasia while avoiding the major motor area entirely, and to resect only a small portion of the sensory region,” says Dr. Kennedy. 

Brain mapping is a technique in which surgeons apply a very low electrical current to small areas of the brain to see which spots control movement, sensation, speech or vision. This helps guide surgery so that critical functions are spared. 

After spending the night in the Pediatric Intensive Care Unit, Charlie “woke up in good spirits – and very thirsty,” Audrey remembers.

She had been holding a ginger ale, and Charlie grabbed the can from her with his left hand. “We were ecstatic,” says Chris. “He was using his hand!” 

Charlie spent a week recovering on the neurology floor and then moved to inpatient rehabilitation, where he spent ten days in intensive physical and occupational therapies to work on coordination and motor skills.