She’d hold his hand and talk to him during the sudden stiffness or muscle spasms and blank stare. She made sure he wasn’t choking. She stayed calm.

And whenever Luke had to be hospitalized at Cook Children’s Medical Center – Fort Worth, Lexi visited as much as she could. She got to know the neurology nurses, cuddled her favorite therapy dog, and watched as the staff treated Luke with innovative procedures and kindness.

Details that cater to kids made an impression on Lexi under the Blue Peaks. From the playroom to the holographic fairy on the wall … Cook Children’s was magical in her eyes. 

Lexi can’t remember a time she didn’t want to be a nurse. And she found her perfect fit in February 2025 when she started working as a registered nurse in familiar territory: the Cook Children’s neurology department. No longer a visitor, Lexi made Cook Children’s her workplace home. 

For more than a decade while they lived under the same roof, Lexi assisted her brother when his seizures flared up. That experience in caregiving gave Lexi a soft heart and a skillset that she now puts into practice caring for others. Seizures don’t intimidate her. She also sees the world through the eyes of patients’ siblings; she understands their questions and concerns.

“I love pediatric nursing. Children are resilient. They can go through so much, and their little bodies are so tired, but they bounce back and they handle it like champs,” she said. “I love taking care of the patients and their families, talking them through diagnosis, through treatment plans, everything.”

Lexi’s presence by Luke’s side has comforted him during countless seizures over the years. And if you ask Luke what makes his sister a great nurse, he’ll tell you: “Because she cares.”

Onset of Epilepsy

Seizures are caused by abnormal electrical bursts in the brain. Luke was 5 years old and Lexi was 11 in 2013 when his first seizure happened during a Mario Kart video game at their home in Arlington.

“I tried to hand him the remote, and he just couldn’t pay attention, and he couldn’t hear me,” she said. “I ran to get Mom in the other room, and by the time I came back, he was blue and shaking on the ground.” 

Luke rode by ambulance to Cook Children’s, the first of many hospitalizations. His seizures began to occur multiple times a day, sometimes in frequent clusters that medication couldn’t control. He was diagnosed with a severe form of epilepsy called Lennox-Gastaut Syndrome (LGS).  

As a teen Lexi helped their mom, Ami Waggoner, do research on Luke’s disorder. Lexi lived in the same house with her brother and parents for about 10 years after his epilepsy symptoms started. If she was around when Luke had a seizure, Lexi stepped up. She knew her role: keep Luke safe and keep him company until the seizure passed. She’d ask him to squeeze her hand or give a thumbs up if he couldn’t speak. Sometimes she’d record a video of the seizure to show his doctors. 

Ami, who is also a nurse, noticed maturity and nursing traits in Lexi from an early age. A few examples:

• At home whenever Luke had a seizure, Lexi knew where to find the rescue medications and the steps to follow.

• As a softball player and busy teen, Lexi made time after school to hang out with Luke when he was hospitalized.   

• As a volunteer at monthly neurology support group for Cook Children’s families, she provided crafts and activities for children while their parents attended the meetings. The parents knew Lexi was comfortable around seizures, and they trusted her.

Lexi’s face is Luke’s favorite sight to see when he comes out of a seizure, their mom said. Lexi always responded to her brother’s medical needs by keeping her cool and encouraging him every step of the way.  

Choosing Cook Children’s

Lexi worked as a patient care technician while attending the Tarrant County College nursing program. Her first nursing job was at another Fort Worth hospital. But while attending the 2024 Christmas party for neurology patient families at Cook Children’s, she realized she missed the magic. She wanted to work at Cook Children’s.

Ami remembers what Lexi said after deciding to work with pediatric patients like Luke. I think this is my place. This is what I feel like I'm made for.

When Lexi pivoted in her nursing career to join Cook Children’s Neurology, her mother saw all the pieces fall into place. “So yeah, I’m extremely proud,” Ami said. “It’s grown into this amazing thing where she wants to help so many others.”

Lexi works night shift on the medical center’s fourth floor, which includes the epilepsy monitoring unit. Some of her colleagues have helped care for Luke through the years. If Luke is admitted, Lexi can’t be his nurse.

During her teenage years she absorbed the Cook Children’s culture each time she visited her brother in the hospital. She saw nurses practicing safety, respect, generosity and other values. She felt the impact of family-centered care. Now, in a journey that’s come full circle, she’s back at Cook Children’s and paying it forward.

“I definitely have a passion for epilepsy. I have a passion for finding the cure. I have a passion for helping out the siblings on our unit as well,” she said.

When she encounters a patient’s sibling, she checks to make sure they’re OK. Lexi takes time to explain whatever medical procedure their brother or sister is undergoing, like the electrodes hooked up for electroencephalogram (EEG) monitoring.  

Lisa Mayfield, RN got to know Lexi while taking care of Luke for many years on the epilepsy unit at Cook Children’s. She remembers Lexi cheering him up by bringing his favorite snacks, watching movies with him and walking with him around the unit. His seizures didn’t rattle her.

“I was beyond excited when Lexi joined our team,” Lisa said. “She has a unique prospective that she can share with her patients and their families. She has empathy and an understanding that is unique to families that live with epilepsy every day but don’t let it define them. Lexi is an amazing nurse with critical thinking beyond her years. I am excited to watch her continue to grow in the field that she has been training for her whole life.”

When a new patient comes in, Lexi wants the family to know they’ll get the best neurology care possible from a team that delivers on the Cook Children’s Promise to do everything for the child. 

Celebrate the Struggle

Now age 18, Luke still experiences seizures every day. But his health and quality of life have improved thanks to a 2021 surgery at Cook Children’s that implanted a deep brain stimulation (DBS) tool. DBS -- a network of devices and wires -- sends small electrical impulses to specific areas of Luke’s brain. It’s designed to keep the worst seizure activity under control.

Luke’s parents collaborate with epileptologists Cynthia Keator, M.D. and  Jaehyung Lim, M.D., who oversees the DBS, and the specialists at the Jane and John Justin Neurosciences Center at Cook Children’s. They closely monitor how he tolerates different electrical amplitudes and speeds, and make adjustments as needed.

Because of DBS, Luke was able to cut back on medication. He can think more clearly. He’s more energetic.

The Waggoner family has the confidence to travel on vacations they couldn’t take prior to Luke’s DBS surgery. They appreciate the things Luke enjoys, especially trains and trips to the zoo. Their family motto? Celebrate the Struggle.  

“Living with Luke taught me to make the best of any situation. He always has a positive attitude,” Lexi said. “Even though I’ve moved out, Luke is still such a big part of my life. We’re very, very close. I’m thankful that he is doing as good as he is right now, and I love to spend time with him.”

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Following treatment, children experienced fewer seizures and demonstrated improved communication and other developmental skills – outcomes not generally possible with typical antiseizure medications.

Researchers at Cook Children’s played a key role in the clinical trials that led to these findings, which were published in a March 2026 article in the New England Journal of Medicine (NEJM). Pediatric epileptologist M. Scott Perry, M.D., head of Neurosciences and director of the Justin Institute at Cook Children’s, co-authored the article and served as the lead investigator for one of the pivotal studies.

Dravet syndrome affects about 20,000 people in the United States. It causes seizures and problems with speech, sleep, development, intellectual abilities and more. About 100-125 patients from across the country come to Fort Worth seeking out Cook Children’s nationally recognized expertise in Dravet syndrome care.

Two initial studies – called MONARCH and ADMIRAL – enrolled 81 patients at multiple sites, including four patients at Cook Children’s. Two extension studies – SWALLOWTAIL and LONGWING – enrolled 75 patients. Dr. Perry served as lead investigator of SWALLOWTAIL.

The primary purpose of the studies was to assess the safety of zorevunersen, a medication administered via spinal tap. Participants received different amounts to help determine an optimal dosage that works safely and effectively.

The results are exciting, Dr. Perry said, because they indicate zorevunersen modifies Dravet syndrome by targeting the root cause. Study participants had fewer seizures and improvement in decision making, social interaction, communication, motor skills and other adaptive behaviors. 

“We have a treatment which at least in early phase studies shows the potential to address the underlying genetic reason for the condition and as a result bring about improvements in the symptoms and frankly change the course of the condition for the patient, which is a considerable advancement over what we currently have available,” Dr. Perry said. 

Adverse side effects were mostly mild or moderate, including elevated protein in the cerebrospinal fluid and pain after the spinal tap procedure.

Understanding Dravet

Most people diagnosed with Dravet syndrome have a mutation in the SCN1A gene that disrupts the production of normally functioning sodium channel proteins in the brain. The sodium channel is essential for neurons to fire appropriately. Seizures occur when the electrical flow misfires.

Antiseizure medication is currently the standard of care. But antiseizure medications don’t always control the seizures. And even when the frequency of seizures drops off, the patient’s cognitive delays and other symptoms don’t necessarily improve. 

“Dravet is a condition called a developmental and epileptic encephalopathy, which means the seizures themselves cause problems, but the underlying reasons for the seizures also cause problems,” Dr. Perry said. “This drug aims to address that by treating the actual genetic abnormality. And when you correct the gene that causes the problem, now you can improve seizures and the nonseizure symptoms that come with it.”

While one copy of the gene produces good proteins, Dr. Perry explained, the mutated version found in Dravet makes proteins that don’t function effectively. Zorevunersen is a precision medicine that capitalizes on the healthy copy of SCN1A.

How does it work? Ribosomes are the part of the cells that read messenger RNA (mRNA), which Dr. Perry described as the recipe that forms the sodium channel. Zorevunersen prompts the ribosomes to skip over the portion of mRNA that discards both healthy and unhealthy copies of the gene. No longer discarded, more healthy copies are available to create more functioning sodium channel proteins.  

Methods and Findings

Patients with Dravet syndrome from ages 2-18 years participated in the MONARCH, ADMIRAL, SWALLOWTAIL and LONGWING trials beginning in June 2020. Eighty-one percent of participants were taking three or more antiseizure medications prior to their first dose of zorevunersen.

The main objective was evaluating the safety of the trial therapy. Patients received one or more doses ranging from 10 milligrams to 70 mg. Data showed a reduction in seizures compared to the patients’ baseline numbers.  

“What we determine from these studies is that initial doses of 70 mg performed better than any of the lower doses,” Dr. Perry said. “People who got multiple doses of 70 mg did better than people who got single doses. People who got two doses of 70 mg did similarly to people who got three. That’s why we’ve chosen two 70 mg doses as the loading dose for the ongoing phase 3 clinical trial.” 

Participants in the extension studies followed up by receiving doses up to 45 mg every four months. At that level, they continued to maintain the similar reduction in seizures, he said.

Changes in adaptive behaviors and quality of life were measured by various scales based on impressions from clinicians and caregivers. Improvements were reported across the board. 

Biotechnology company Stoke Therapeutics, Inc. opened the next phase of the trial, called EMPEROR, in August 2025. Participants will receive either zorevunersen or no treatment in four spinal taps over a 52-week period.

Dr. Perry said inclusion in the NEJM article shows Cook Children’s is making a significant contribution to a big advancement in Dravet syndrome care. By joining clinical trials, research sites help find solutions and hope for patients with complex conditions.

“Cook Children’s does meaningful research. This is clinical trial work developing novel new therapies for devastating diseases,” he said. “Cook Children’s played a key role in the development of this treatment, and the NEJM is an incredibly prestigious journal. It’s a big deal for Cook Children’s to be a major contributor to such a huge contribution to science.”

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Shanley Stuteville, 25, has been a lifelong patient at Cook Children’s after she was diagnosed with epilepsy at 3 years old. When she was 19, she underwent life-changing lesionectomy surgery and hasn’t had a seizure since 2020. This year, she decided to give back to the community of patients at Cook Children’s while also pursuing her dream to help others.

Shanley was first brought to Cook Children’s by ambulance after her first seizure. She had many neurology appointments with Howard Kelfer, M.D., who became her primary care doctor.

When epilepsy surgery became an option, she also started seeing Scott Perry, M.D., pediatric epileptologist and Medical Director of Neurology for Cook Children’s. Cook Children’s has a Level 4 Epilepsy Center.

“I can’t imagine what things would’ve been like if I hadn’t had Cook Children’s on my side throughout this journey. I truly can’t say enough about how incredible the doctors and staff have been to me since I was a child,” Shanley said.

Experiencing testing in Cook Children’s Epilepsy Monitoring Unit

To pinpoint where her seizures stemmed from in the brain, Shanley stayed in the Cook Children’s Epilepsy Monitoring Unit (EMU).

“I knew when I first met Shanley that I could help her,” Dr. Perry said. “Her focal seizures were clearly coming from a single area of abnormality in her brain that I felt confident we could safely remove.”

Staying a few days in the EMU can be scary and Cook Children’s does all they can to make the experience feel as safe as possible. Shanley has a loving support system of family and friends, which makes all the difference in experiencing life with seizures, the side effects of seizures and medications, and the limitations that epilepsy can bring.

“Whenever I would have to stay up all night prior to the EEG testing, my family would make a fun themed party out of it and we would stay up watching movies and playing games. My friends also came to visit and everyone’s support made all the difference for me,” Shanley said.

Having epilepsy surgery

Shanley went through necessary testing to be considered for epilepsy surgery of a lesionectomy, which removes a lesion or abnormality in the brain.  For a long time, she thought she would never be a candidate so when she found out she was, she and her family were so grateful they had finally found hope to control her seizures.

“I had never been so confident that I wanted to do something in my entire life. To have a chance of recovering from epilepsy was incredible and something I couldn’t pass up,” she said.

The surgery process went smoothly for Shanley and even Dr. Perry noticed how comfortable she felt about the surgery.

“I recognized immediately her engagement in the surgical process and how she could change how people view epilepsy surgery when she shared her plans to create a children’s book about visiting the epilepsy monitoring unit,” Dr. Perry said. “The book she and her aunt created was amazing.”

How epilepsy surgery changed Shanley’s life

Shanley has been seizure-free since July 2020. It has been a wonderful four years for her with some challenges as well. Deciding to slowly reduce epilepsy medication after brain surgery is common for a lot of people and she experienced side-effects like anxiety as well as learning how to suddenly live her life without epilepsy anymore. She had to grow her inner confidence again and learn how to live with how her brain worked differently.

Even with the challenges, she’s so glad she chose to have surgery and experience the transformation it has made in her life. In fact, she is currently studying and plans to graduate with a Master’s degree in psychology in May 2025.

 “To see her all these years later, seizure-free and living out her own dreams means everything to me,” Dr. Perry said. “Personally, it gives meaning to what I do daily. But to then know she is pursuing psychology is even more impactful given how often children with epilepsy need the services of psychology. I can only hope we get Shanley to come back to work for us.”

Shanley’s love of art and donation to the “neuro art collection”

Shanley has been creating art since she was very young. Her favorite kinds of art include mixed media illustrations with colored pencils and gouache paint, or digital art like the piece she created for the “neuro art collection” at the Jane and John Justin Institute for Mind Health which was started by Dr. Perry.

“Shanley’s donation to the neuro art collection is exactly what I envisioned when my wife and I first commissioned the original art collection. I knew that the neuroscience community was full of artistic and creative people. I knew their art could inspire others and I hoped that my own patients would one day give back to our collection. Shanley is the first former patient to contribute her talents to our collection and the first former patient to benefit all the patients that come behind her,” Dr. Perry said.

Shanley’s intention with the piece she’s donating is to give people the feeling of hope. With her experiences living with epilepsy, her surgery and all of the ups and downs of life, she’s always tried to look for the “rainbow after the storm” and hopes to convey that in her art.

Hope for the future and advice for people battling epilepsy

With her goal of getting a degree in psychology next year, Shanley plans to have the opportunity to work with children who have chronic neurological disorders like epilepsy. For a long time, doctors have only treated epilepsy symptoms, not the emotional, social and psychological challenges that living with epilepsy creates. She also wants to help people who’ve had challenges readjusting to life after their long-term disorder is suddenly gone.

Shanley thinks it’s important for people battling epilepsy to remember they are not their disorder. Living with epilepsy and experiencing surgery has helped Shanley become even more empathetic. She encourages people to look for the positive and for opportunities wherever they can, to lean into what they love and to remember that they aren’t alone.

One in 26. That’s the number of people who will develop epilepsy in their lifetime. Each November, Cook Children’s Comprehensive Epilepsy Program creates original T-shirt designs to raise epilepsy awareness. This year’s theme is “Lights, camera, take action!”

Megan was the “one.” She was born in 1997. Her mom, Mary Overfield, had a healthy full-term pregnancy. However, shortly after birth, Megan began experiencing infantile spasms and was later diagnosed with a rare form of epilepsy, Lennox-Gastaut Syndrome (LGS), at 4 years old. At 16, genetic testing revealed that Megan also had a rare genetic anomaly known as PURA Syndrome.

“Megan was included in the first genetic study of this particular anomaly at Baylor College of Medicine in 2014 which became identified as PURA syndrome,” Mary said.

Sadly, Megan passed away earlier this year at the age of 26. Despite her struggles with LGS and other medical complexities, Mary said Megan was a bright light in her life – as well as the lives of her husband, Dane, and their older daughter, Emily.

“She always showed the strongest spirit,” Mary said, “Megan taught all three of us many important life lessons without ever saying a word.”

While Megan never received care at Cook Children’s, her family had a special bond with Cook through the annual epilepsy awareness T-shirt campaign. This year’s design celebrates that connection and Megan’s story.

Parenting a child with special health care needs

Being a specialized caregiver around the clock can be very isolating and take a toll on one’s health. Mary said she joined Twitter (now X) shortly after its launch when Megan’s health care team recommended social media as a way to connect with other families facing similar challenges.

“I found a great deal of support on Twitter, connecting with foundations, epileptologists, medical professionals and other families like ours,” Mary said. “I started feeling less isolated in my parenting journey. Our family connected with the LGS Foundation and found Executive Director Tracy Dixon-Salazar, among others there, to be an amazing source of helpful information, understanding and support.”

Discovering Cook Children’s and raising epilepsy awareness

Mary and Emily have been raising epilepsy awareness for many years. They came across M. Scott Perry, M.D., a pediatric epileptologist and head of Neurosciences at the Jane and John Justin Institute for Mind Health at Cook Children’s, on social media. Dr. Perry's annual T-shirt fundraiser each fall raises epilepsy awareness and support for Cook Children’s Comprehensive Epilepsy Program. 

“We purchased Dr. Perry’s first epilepsy awareness T-shirts years ago and every fall we eagerly await to learn the unique themes and designs for his annual T-shirt fundraiser with Cook Children’s,” Mary said.

International LGS Awareness Day

November is National Epilepsy Awareness Month and November 1^st is International LGS Awareness Day and Illuminate for LGS Awareness. Mary and her family illuminate their home with purple lights all month to educate and raise awareness for epilepsy and LGS.

“Megan always had purple string lights hung above her bed for the month of November and we have purple outdoor lights as well as our LGS awareness yard sign for the whole month,” Mary said. “Emily wears—and Megan also wore—the annual T-shirts designed by Dr. Perry and the LGS Foundation. Emily has always been a fierce advocate for her sister, including her in as much of life as possible and continues raising awareness for rare epilepsies.”

Mary and her family live in Rochester, New York, and she said the city also lights up for LGS in purple and green lights on November 1.

“We feel it is important to raise awareness as the experts work towards a cure for rare epilepsies,” Mary said.

LGS clinical studies

With Megan experiencing LGS and PURA syndrome, she has contributed to a handful of clinical studies.  

“Megan participated in multiple clinical trials for new antiseizure medications (ASMs) over the years as we feel both research and seizure cessation are integral to ending rare epilepsies,” Mary said.

At Cook Children's, Cynthia Keator, M.D., Medical Director of Neurology at the Justin Institute, was recently awarded an Endowed Chair from the W.I. Cook Foundation for her proposal to establish a Lennox-Gastaut Syndrome Center of Excellence.

Through this clinical program, Dr. Keator aims to create a natural history study to better define the course of epilepsy and other non-seizure symptoms of LGS. She’s also working with the Pediatric Epilepsy Research Consortium (PERC) to develop a national consensus on LGS treatment and care. The goal is to bring attention to health care decisions and co-existing conditions, or comorbidities, not targeted by current therapies in LGS as well as support needs for preventative intervention to develop new guidelines, treatments and protocols.

Advice for other families

Reaching out to organizations like the LGS Foundation and staying educated can help families feel connected and understood in their own journeys. Mary also encourages families to take life one day at a time and to enjoy the “infrequent, but happy moments when they occur.”

“Megan enjoyed numbers and counting, reading books, playing her chimes and many other simple joys in life,” Mary said. “She always reminded us to enjoy the little things, especially when she was powering through a particularly hard seizure day. Dane and I agree that we would all be very different people had Megan not been born into our lives.”

Remembering Megan

Mary and her family feel fortunate that they had 26 more years with Megan than they were promised when she was born.

“Although her time on earth was short in quantity, we tried our best to ensure it was long in quality,” Mary said.

Mary believes her family is fortunate they met so many amazing people throughout Megan’s life including gaining “extended family members” for whom they care deeply.

“If it weren’t for Megan, we would not have crossed paths with amazing humans like Dr. Perry and many others in the rare epilepsy realm. For that gift from Megan alone, we are especially grateful.”

Connect with Mary

To connect with others who have experience living with LGS in their families, consider following Mary on X (Twitter) and Instagram.

Support Cook Children's Epilepsy Awareness

To purchase a Cook Children’s 2024 epilepsy awareness T-shirt, please visit Under the Peaks retail shop at Cook Children’s Medical Center - Fort Worth, or call 682-885-7325. If you live outside of the area, you may order your T-shirt online here: https://www.customink.com/fundraising/1in26-2024

Nearly 500,000 children nationwide have epilepsy. For 70% of them, medication successfully controls their seizures. But for 30% of children with epilepsy, medications fail to control seizure activity, making them candidates for surgical intervention.

“For kids whose seizures can’t be controlled with anti-seizure medication, this is a huge burden for the family and the children,” Dr. Papadelis said. “Sometimes these kids have several seizures per day. Often, the best available treatment for them is brain surgery where the neurosurgeon dissects the area of the brain where the seizures originate. If we successfully disable this area, either with laser ablation or with resective or disconnective surgery, we are able to control the seizures and the child can become seizure-free.”

Critical Precision

For successful brain surgery with minimal complications, precise brain and seizure mapping is crucial to interrupting seizures while also preserving crucial physiological functions of the brain, such as language and movement. In many cases, current techniques in brain mapping for seizure localization can precisely pinpoint where seizure activity originates in the brain, known as the epileptogenic zone. These techniques include electroencephalography (EEG), computed tomography (CT) and magnetic resonance imaging (MRI), as well as other modalities.

But not all seizures have a single point of origin. Some seizures originate from a synchronized network of abnormal electrical activity in the brain. In these cases, one test may point to one location for seizure origin, while another localizes a different area of the brain as the culprit.

“There are several new studies, including ones published by my research teams, that show in these cases it's not a single area of the brain which is involved in the generation of the seizures but, rather, is the whole brain network that is somehow synchronized during seizures,” Dr. Papadelis explained.

Neurosurgeons can use intracranial-EEG (iEEG) to help identify epileptogenic networks within a patient, but this test also has limitations, one of them being its invasiveness.

“Many children with epilepsy require an invasive surgery in which we implant electrodes directly into the brain to help us better understand where their seizure activity is starting, prior to us offering a more definitive surgery intending to stop the seizures,” said Daniel Hansen, M.D., a Cook Children’s pediatric neurosurgeon and medical director of Neuro-Trauma. “Dr. Papadelis’ research may potentially lead to not needing this step for some children.”

In addition to being invasive, an iEEG only records activity within the area of the brain where the electrodes are placed rather than throughout the entire structure. These testing variations and limitations make it difficult for surgeons to pinpoint the entire zone within the brain where surgery should be performed in order to interrupt the whole of an epileptogenic network.

Seizure-free Future

Dr. Papadelis aims to give neurosurgeons and epileptologists a new method to localize seizure onset more completely.

“A more detailed understanding of seizure networks will allow us to better counsel patients on their true chance of being seizure free after surgery, while also allowing us to be more precise and targeted with our surgeries,” Dr. Hansen said.

Dr. Papadelis’ study will explore the effectiveness and accuracy of combining the outputs of two types of non-invasive imaging and brain mapping techniques as they’re performed simultaneously — magnetoencephalography (MEG) and high-density EEG (HD-EEG). The MEG test measures the magnetic fields produced by the brain’s electrical activity, while the HD-EEG records brain activity using more than 500 closely spaced electrodes placed all over a patient’s head. Such a setup is unique in the country.

In addition to improved seizure mapping and surgical precision, this new technique may also open the door for children whose cases were previously considered inoperable. 

“This type of work potentially helps not only the many difficult cases we currently encounter, but could uncover other cases that would be good surgical candidates, whereas previously they would not have been considered,” said M. Scott Perry, M.D., epileptologist and head of the Jane and John Justin Institute for Mind Health at Cook Children’s. “Take cases of apparent generalized epilepsy, which is essentially epilepsy coming from the whole brain, as an example. In some instances, this is just a more diffuse network that may still be eligible for treatment if we locate the primary hubs.”

The study will begin in March 2024 and continue for five years. Dr. Papadelis and his colleagues believe this new seizure mapping technique will give physicians a better read on the scope of their patient’s epilepsy, giving more children the chance for a seizure-free future.

Cooper Jeffcoat was a 15-year-old sophomore in high school when his life changed forever. He had a passion for skateboarding and dreams of joining the military or attending the police academy after graduation. 

“All of a sudden, it was like I got hit by a truck,” Cooper said.

Onset of Seizures

On October 13, 2021, Cooper had his first convulsive tonic-clonic seizure—a seizure categorized by a loss of consciousness and violent muscle contractions. He was working on an assignment at school and only remembers blinking before his seizure started.  

“The school called me and said that his lips were blue and he wasn’t breathing,” said his mother, Amber Snider. “They were having to resuscitate him, and I was thinking, are you sure this is my kid? Do you have the right number?”

Amber left work immediately and headed to Cooper's school, where an ambulance had arrived to take him to the hospital. After some testing, Cooper was released. 

The next day, Amber stayed home with Cooper. She was talking to him from another room in the house when he stopped responding to her. She hurried to the living room to find Cooper having another tonic-clonic seizure and resuscitated him with CPR. From that point on, Cooper began having seizures almost every day. 

“Our whole life just did a 180,” Amber said. 

Diagnosis and Treatment Options 

Cooper's care team at Cook Children’s performed many scans and tests to determine the cause of his seizures. An MRI revealed a cavernous malformation—a group of tightly packed, abnormally small blood vessels—in the left frontal lobe of his brain. Cooper then underwent a magnetoencephalogram (MEG) to map out the electrical charges in his brain and determine if they were related to the malformation. 

“Under that evaluation, his epilepsy was consistent with generalized epilepsy and found to be completely independent of his malformation,” said Cooper's neurologist, Cynthia Keator, M.D.

Over the next several months, Cooper was prescribed roughly six different types of medication, none of which stopped him from having disabling breakthrough seizures. Each seizure slowed him down and affected his motor skills and memory. During one of his seizures, Cooper fell and dislocated his shoulder. He has done so roughly 20 more times since.

When it became clear that his medications were ineffective, Cooper's doctors started to consider palliative surgery options. 

“Palliative means we know can’t fix this 100%, but we can likely significantly improve the overall quality of life and cognitive function of the patient,” Dr. Keator said. 

Autism and Epilepsy

Cooper is on the autism spectrum, which has been known to have a strong association with seizures. 

“We know children with autism are more likely than the general population to develop seizures or epilepsy,” said Dr. Keator. The reason, she says, is yet to be fully understood.

 “We know of many genes that are associated with epilepsy and autism, but there are probably thousands of others that we have yet to discover,” she said. “We just don't know the underlying gene or combination of genes that answer why some children with autism develop epilepsy.”

Responsive Neurostimulation Device

According to Dr. Keator, the two main treatments to consider for generalized epilepsy that don’t respond to medication are deep brain stimulation and responsive neurostimulation. Both methods involve the implantation of a device into the brain that sends a signal or impulse to disrupt the electrical activity that causes a seizure. 

After a very thorough evaluation, Cooper was deemed a great candidate for the implantation of the responsive neurostimulation (RNS) device. 

“The RNS allows us to put electrodes down into areas of the brain that are responsible for either generating seizures or mediating the network through which seizure signals are sent,” said Cooper's neurosurgeon, Daniel Hansen, M.D.

The implanted electrodes can detect abnormal electrical activity in the brain within microseconds, often before a seizure even begins. 

“When the device detects that activity, it's able to send a small electrical impulse through the electrodes to disrupt that abnormal electricity,” Dr. Hansen said. “Ideally it never becomes a full-blown seizure, or at least a full-blown clinical seizure where we would see outward manifestations of it.”

The Surgery

On October 27th, 2022, Cooper had his RNS device implanted. 

According to Dr. Hansen, the entire surgery only takes up to two hours. Most patients don’t experience much pain afterward and are even able to go home the very next day. Cooper's surgery went off without a hitch. Once the device was in place, his care team was able to start tracking his seizure activity immediately. 

“We actually train the device to recognize his specific type of electrical pattern so the treatment is really tailored to him,” Dr. Hansen said. 

Typically, by the time a patient comes back for their first follow-up after surgery, there is enough data to train the device on how to disrupt their unique seizure activity.

Significant Improvement

After his surgery, the time between Cooper's seizures gradually began to increase. His first seizure-free period was 15 days, followed by one month, then two months. Cooper still takes some medications, but thanks to the RNS device, he will hopefully be able to wean off of them eventually.

“The seizures have really died down,” Amber said. “He can tell when he's going to have one because it'll send an electric shock, and every once in a while he can feel it.” 

The RNS device also decreases the time it takes for Cooper to return to a normal state of functioning after a seizure. 

“It took him hours to get back to some kind of normalcy before,” said his father, James Snider. “The first time he had a seizure with the device, he was already almost back to Cooper within 10 minutes.”

Finding Strength in Faith

Cooper's family attributes his improvement largely to their faith in God and the power of prayer. 

A few weeks before Cooper’s RNS device was turned on, a kind stranger asked to pray over James. Without knowing anything about Cooper, the stranger somehow knew that James had a son who was suffering from seizures and shoulder troubles. He reassured James that something was about to drastically improve Cooper’s life. This encounter strengthened James’s faith in the RNS device and his hope for healing.   

“If God’s given a blessing, I want his blessing to be known,” James said. “There might be a family down the road that's going through the same thing and needs to hear our story.”

Continued Improvement With RNS 

“All of the literature on the device tells us that the initial seizure response within the first couple of years is very often improved upon over the subsequent years,” Dr. Hansen said. “For reasons that are not entirely understood, the seizure network and modulation component really seem to continue to improve over very long periods of time.”

Studies in adults have shown continuous improvement in seizure control rates even ten years out from surgery. These findings are extremely promising for Cooper, whose symptoms should only continue to lessen given his great response to the device so far. 

“The RNS is wonderful for children who previously had no other options for seizure control,” Dr. Hansen said. “This has been a really big, life-changing advancement.” 

Looking Forward

Cooper is now a senior in high school. While he was unable to attend school before his surgery, he is now able to go twice a week.  

Video games, writing, and drawing bring Cooper joy. He enjoys talking to his friends online and sketching video game characters, anime, and superheroes. 

Though Cooper’s dreams have changed since he was diagnosed with epilepsy, he still has high hopes for his future. He wants to attend Sam Houston State University and earn a degree in Criminal Justice so he can become a forensic psychologist. 

Though he’s feeling more like himself these days, Cooper knows the road ahead of him will not be easy. His seizures have lessened, but his battle with epilepsy is not over. 

“There will be some hard days, but as soon as I get through it, it’s going to feel like a huge achievement,” he said. “I don't want people to recognize me for my seizures. I want people to recognize me for my perseverance.”

Join us for “Under the Lights,” an inspiring story about a teen with epilepsy, followed by a Q&A with the film's writer and director Miles Levin and executive producer Greg Grunberg. This event is hosted by Scott Perry, M.D., an epileptologist and head of Cook Children’s Jane and John Justin Institute for Mind Health. 

This event begins at 6 p.m. with light appetizers, followed by the film screening and virtual discussion. Registration is required to attend. Get your complimentary tickets here.

The Story

Under the Lights is the story of Sam, a boy with epilepsy, so desperate to feel like a normal kid, he goes to prom knowing that the lights will make him have a seizure. 

Cinema has historically stigmatized and ignored people with epilepsy. A demographic of 1 in 26 who have almost never been represented authentically on screen, and suffer from brutal stigma every day. Written and Directed by filmmaker with epilepsy, Miles Levin.

Learn more about "Under the Lights" here.

Sunday, March 26, 2023 is Epilepsy Awareness Day to spotlight this neurological condition that affects nearly 50 million people worldwide. People are encouraged to wear purple. 

By Ashley Antle

There was a time when constant seizures plagued 4-year-old Sofia Gutierrez-Lopez’s life. They started when she was 19 months old and gradually the seizures occurred hundreds of times within 24 hours. Day and night, Sofia’s brain misfired, stealing her ability to hit developmental milestones and live a normal life.

No amount or combination of seizure medication helped, which is common with Sofia’s type of epilepsy. Sofia has a severe malformation of the left side of her brain, and that’s where her seizures originated. Her parents were desperate for something — anything — that would free their daughter from the unrelenting seizures and allow her to have as normal a childhood as possible.

In April 2022, Sofia underwent surgery at Cook Children’s. Now a year later, her seizure activity is dramatically reduced and her quality of life dramatically improved. Since surgery, Sofia had one day where she experienced three seizures, compared to hundreds every day before surgery.

M. Scott Perry, M.D., an epileptologist and head of neurosciences at the Jane and John Justin Institute for Mind Health at Cook Children’s, was one of several doctors treating Sofia. He recommended a functional hemispherectomy — a surgery that removes or disconnects half of the brain to interrupt the seizures and stop their assault on the healthy side of the brain. In Sofia’s case, it would be the left side.

Like any surgery, it had its risks, but so did living with a brain under constant attack. Sofia already had developmental delays, and every seizure increased the potential for more. Eventually, the seizures could rob her of the ability to walk, talk and eat. Children with uncontrolled seizures also are at greater risk for sudden death during a seizure.

“In this case, the risk of surgery is weighed against the risk of her continuing to have seizures,” explained Daniel Hansen, M.D., a pediatric neurosurgeon specializing in epilepsy surgery and medical director of neuro-trauma at Cook Children’s Medical Center. “The reality is epilepsy surgery is really quite safe when done by a trained epilepsy surgeon or a pediatric neurosurgeon with epilepsy experience.

“The risk of catastrophic operative complications or unexpected postoperative complications is very low,” Hansen said. “Even knowing that there will likely be permanent changes to strength and vision on the opposite side of the body that are unavoidable, the trade-off to being seizure free is, for most children, completely worth it.”

Fateful Connection on Trip

Even so, having a portion of their child’s brain disconnected was a scary thought for Sofia’s parents.

“It's crazy to think that they could actually go in her brain, take part of her brain out and that is going to help her,” said Cristina Gutierrez-Lopez, Sofia’s mother. “It sounded like fiction.”

Sofia’s parents weren’t quite ready for that step until a trip to Mexico to visit family brought a turn of events that not only confirmed the surgery was necessary, but that Cook Children’s was the right place with the right doctors to have it done. While in Mexico, Sofia suffered a seizure emergency that sent her to the emergency department of a local hospital. A physician there seconded the diagnosis of Cook Children’s neurologists and explained that surgery was the only option for any relief.

Without knowing the family’s already established ties to Cook Children’s, the physician told them about a neurologist he knew in Texas to be one of the best in epilepsy treatment. He attended a presentation made by this Texas doctor at a medical conference. That Texas physician turned out to be Dr. Perry. The same Dr. Perry that Sofia had seen as a patient before her fateful trip to Mexico.

Sofia’s parents were stunned at the connection. Her mother said it was confirmation that God had orchestrated these events to bring them to a place of certainty and peace and that surgery was the right next step for Sofia.

When they returned to Fort Worth, the family met again with Dr. Perry and discussed the hemispherectomy. He introduced them to Dr. Hansen who would perform the procedure. Gutierrez-Lopez told the medical team they were ready.

“I am clear on all the risks,” she said. “I understand that this is the only thing that can possibly help my daughter.”

“When we went home from the hospital, I took home the same Sofia I brought to the hospital, but improved,” Gutierrez-Lopez said. “She had the same communication skills and the same physical ability. Everything was the same or better, plus no seizures.”

As complicated and risky as epilepsy surgery sounds, outcomes like Sofia’s are actually common.

“Sophia's case and her outcome is nothing short of astounding,” Dr. Hansen said. “I mean, we go from a girl who had literally hundreds of seizures a day to almost seizure-free. But although that outcome is amazing and astounding, it is the expected outcome. This is not a one-off sort of thing for children with epilepsy.”

Breaking Cultural Barriers

A perception that the brain is too complex to fix and, therefore, should not be touched is a common misconception, especially among minority groups, according to both Dr. Perry and Dr. Hansen. Dr. Perry is studying the disparities that exist within epilepsy treatment and, in particular, surgery. Many of those disparities are already well documented but a lot of cases use insurance databases to illustrate the fact that more white people have epilepsy surgery than non-white people, according to Dr. Perry. The problem with this approach, he says, is that it only looks at those who underwent surgery and not at those who were offered but declined.

“We say there's a disparity, which is true, but we don't know why there's a disparity,” Dr. Perry said. “Was it because they weren't offered the opportunity because maybe their insurance is not as good? Or their social situation isn't as good, or they were offered but declined for whatever reason?”

Dr. Perry’s study, which now has a database of more than 2,000 patients, examines the cases of those referred for epilepsy surgery and any differences between the work-up of each case. For example, do people of color have fewer medical tests and therefore are not revealed to be good candidates?

“It turns out that the work-ups are not really different based on race or ethnicity,” Dr. Perry said. “However, based on the data we’ve collected so far, people of color are almost four times more likely to decline the opportunity for surgery when offered.”

The question now becomes, why?  

“Insurance as a primary factor is not the whole story,” Dr. Perry said. “I think that's one limitation, but another limitation is there are cultural barriers to getting epilepsy surgery, and if we don't understand those barriers, then getting everybody the best insurance is not going to fix the problem. There's an aversion to this treatment approach and that's something we need to explore a little further because we need to learn what their concerns are so that we can address those barriers and make sure this opportunity is available to everybody.”

Tracy Vang, director of equity and inclusion at Cook Children’s, agrees. She cited the book “The Spirit Catches You and You Fall Down” by Anne Fadiman as an example of how cultural beliefs intersect with medicine when it comes to how some perceive illness, what causes it, and how it should be treated.

That’s why Gutierrez-Lopez shares her daughter’s story. 

She wants other parents, particularly those who share her Latino heritage, to know that while these are hard decisions to make, parents should consider the possibilities for their child over their own fear or perceptions of surgery.

“Fantasy” is the word she used to describe her initial impression of epilepsy surgery. After much of her own research, putting her faith in action, and trusting the capability of Sofia’s doctors, she pushed past her disbelief and fear. 

“As a mother, you never want to expose yourself to losing your children or anything bad happening to them, but when you have special needs children, the pain of seeing them suffer teaches you to be strong enough to take risks when you know there is hope for a better quality of life for them,” Lopez-Rosas said. “We trust in God Almighty and in the wisdom he has given to the doctors and put our little ones in their hands. They would never suggest surgery if they did not know that there is a great chance of success.”

But it was one of the people who could not be at the event that was the cause for celebration. Kelley Pettit spoke to the group in attendance and let them know that her son Cole would not be attending for all the right reasons.

“I wish Cole was here to tell you thank you from the bottom of his heart, but the reason he’s not here is because he is a sophomore at Texas Tech University,” Kelley said. “I wish you could know how amazing that truly is because there was a time that graduating from high school was not a certainty. There was a time where driving a car was not going to happen. A time where going to college was out of our reach.”

There was a time when the Pettit family wasn’t given much hope for their son. Cole, who is 19 now, had his first seizure at the age of 5. For 10 years, Kelley said her son struggled with seizures and that meant he struggled in school. He was constantly fatigued. Epilepsy hurt his ability to interact socially with friends. His self-esteem suffered.

Cole went through nine different medications that all failed and three different doctors, “who all told us the best we could do was just keep changing medications” Kelley said. Cole’s epilepsy became more debilitating as he reached 12 to 15 seizures a day.

Kelley says the turning point happened when she went to an event sponsored by the Epilepsy Foundation. The speaker that day was Angel Hernandez, M.D., who was a neurologist and epileptologist at Cook Children’s at the time.

She spoke to Dr. Hernandez about her son’s condition and he gave her hope that maybe something could be done for Cole. Kelley, who lives in Dallas, drove to Fort Worth for Cole to receive a full battery of tests. The test results showed that Cole could receive surgery.

David Donahue, M.D., a neurosurgeon at Cook Children’s, resected the part of Cole’s brain causing the epilepsy. That was four-and-a-half years ago and Cole hasn’t had a seizure since the surgery.

“I can’t thank you enough for the good work you are doing here. It’s absolutely a miracle,” Kelley said. “We’re very, very blessed. We appreciate you so much. Keep it up. Keep changing lives. Thank you for giving me my kid back. His life is so different now than where we were headed. We really didn’t think we would have this opportunity. From the bottom of my heart, from me, my family and my son, thank you.”

1 in 26

Cole is 1 in 26 people in the world who will develop epilepsy at some point in their lifetime. That’s greater than the number of people with autism, Parkinson’s, multiple sclerosis and cerebral palsy combined. Sixty-five million people in the world live with epilepsy.

A third of those people have uncontrolled seizures and for 6 out of 10 people with epilepsy, the cause is unknown.

“Despite the staggering numbers, epilepsy remains a diagnosis few people talk about," said Scott Perry, M.D., medical director of Neurology and co-director of the Jane and John Justin Neurosciences Center. “Many misunderstand the disorder which results in social isolation, stigma and fear. Furthermore, the money dedicated to research in epilepsy pales in comparison to funds spent for disorders which are much less common. It is our duty as health care providers in Neuroscience, to help eliminate epilepsy and we do this by increasing awareness.”

Cook Children’s community has come together to support epilepsy awareness throughout November. Starting Nov. 1, the medical center will be lit in purple to signify the dedication to raising awareness. Employees will be wearing purple or one of two epilepsy t-shirts they designed to spread the word of how common of a disorder epilepsy is.

Weekly educational lectures are planned for parents, family members and patients with epilepsy covering topics of interest and demonstration for the public on seizure safety and first-aid.

Then her diagnosis of epilepsy at 7 years old changed this “big character” into a shy little girl, afraid of what people would think if she had a seizure in front of them. When she attempted to return to the porch and entertain her cousins, she had a seizure. They thought she was joking and they all laughed.

“I'm just really a friendly person and I love people,” Bonita said. “I feel like a piece of that was taken away because of my epilepsy.”

Now this 36-year-old mother of four refuses to let the disease that defined her for so long do the same for her 10-year-old daughter Francesca.

“Francesca is so vibrant and full of life. I don’t want her to ever lose that and I never want her to feel the way I did,” Bonita said.

Bonita and her husband, Charles, were concerned about the risk of epilepsy for their two older children Jace, now 15, and Trace,13. But with vibrant and healthy boys, the threat of epilepsy was “off our radar” by the time Francesca was born.

When she was 4 years old, preschool teachers told Charles and Bonita that Francesca threw up a few times during nap time. They didn’t mention anything about convulsions during sleep. But when one of the teachers said Francesca wasn’t making eye contact with them after the nap, Bonita’s intuition told her it was epilepsy.

“In my heart of hearts I knew and I didn't want that for my daughter,” Bonita said. “My husband was not really accepting of that idea. He tried to reassure me, ‘It doesn't have to be that. She might just have a stomach ache or a virus.’ I just felt it.”

The family was referred to a neurologist for a sleep study in their then home of San Antonio and within minutes, they saw Francesca’s arm twitch. It affirmed to Bonita what the EEG would eventually show – Francesca did have epilepsy.

Bonita gave into a short period of beating herself up. After all, she of all people should have recognized the signs of epilepsy she thought.

But the self-pity didn’t last long. Instead, Bonita developed a new resolve. She wouldn’t let her daughter fall into the same trap that she did as a child following her diagnosis. She would become an advocate for her daughter.

“There was a fire lit inside of me that had been missing for a long time because it's totally different watching your child go through this than when it’s yourself going through it,” Bonita said. “The comfort I took as a child was at least I didn’t remember the seizures after they happened. Even though people would tell me, I could get past it eventually. But this is different, seeing it and then it being your child. The time I’m waiting for her to breathe and take that breath … Just for the seizures to stop … it seems like an eternity.”

Following Charles getting his law degree, the Ocampo family returned back to their hometown of Fort Worth. Francesca began seeing Scott Perry, M.D., an epileptologist and medical director of the John and Jane Justin Neurosciences Center at Cook Children’s.

Dr. Perry upped Francesca’s dosage of medicine and has been her doctor since 2013. And Francesca tells her mom all the time how funny he is.

Laughter comes easier to the Ocampo family now. Francesca is the proud older sister of Beau, 3 years old, and is doing well with her epilepsy.

“Francesca’s outlook on life is exactly what we all want for our patients. She won’t let her epilepsy define her, she takes care of herself and she enjoys just being a kid,” Dr. Perry said. “As neurologists, it is our job to help patients and their families get their lives back.”

“The things I have dealt with in my life and even in my adulthood because of epilepsy have been difficult, including depression and anxiety.” Bonita said. “What’s changed my outlook on my own epilepsy is wanting to be an example of life and not an example of fear for Francesca. But because of the way she lives her life, Francesca has inspired me.”

Francesca describes herself as “just a big fireball” who refuses to let her condition get her down. She’s began the Fort Worth Academy of Fine Arts this year and plans to use November, Epilepsy Awareness Month, as an opportunity to explain to her new classmates about living with epilepsy.

“It’s not that I don’t care that I have epilepsy,” Francesca said. “I just feel I’m a normal person like everybody else. I take meds and I have to go to the doctor sometimes and get checkups. What’s happening in here, in my brain, is not epilepsy. It’s just my normal brain. There are just some tweaks to it that makes it kind of weird. I don’t have anxiety at all. The only time I get a little sad is maybe when I have seizure. I’m usually always fine.”

Someday, Francesca wants to sing and be in musicals. But it’s her bold outlook on life that’s helped her mom change the role she’s played since a child from being “scared of my life to stepping out” in the forefront.

Francesca asked Bonita to join her in the pool last year. Bonita told her she’d never learned to swim because she was afraid she would have a seizure in the pool and people would see her. Francesca told her mom not to be afraid and she would teach her how to swim. A year later, Bonita is a swimmer.

Bonita’s drive now is to raise awareness for epilepsy. She wrote a letter to the city of Fort Worth earlier this year that culminated with a proclamation for the local Epilepsy Foundation. She researched to contact the right person at Sundance Square to get the city to go purple for Epilepsy Awareness Month in November and reached out to Cook Children’s to do the same.

“I was so proud of the Ocampo family for helping raise epilepsy awareness and I’m equally proud of the medical center for supporting their efforts,” Dr. Perry said. “Sure, our primary goal as physicians is always to help patients become seizure free, but even more important than that is making sure their quality of life is the best it can be. Part of that goal is making sure everyone is educated about epilepsy, so that fears and misconceptions about the disorder are erased.”

And Bonita plans for this to be only the beginning as she wants people to know what life is like for people living with epilepsy.

All of this because a daughter’s condition has given her mom a new outlook on life that she thought had been lost on her grandmother’s porch nearly 30 years ago.

“Francesca is everything, the very embodiment, I wished I could have been,” Bonita said. “It’s not a vicarious, living through my daughter type of thing. I just don’t want that wonderful sense of fun to fade away in her. Francesca has helped me so much. That’s the cool thing about us. By me not wanting her to ever get to that point of fear and anxiety while wanting to be more of an example to her, I have been put in a position where I have to step outside what I was. Where I did feel like it defined me. I don’t feel that way any longer. This is now just who we are. This is us.”

Cook Children's Epilepsy Program

If you have a child with epilepsy, you're not alone — 2.5 million Americans have this disorder. The National Association of Epilepsy Centers recognizes Cook Children's Comprehensive Epilepsy Program as a Level 4 Pediatric Epilepsy Center. Level 4 epilepsy centers have the professional expertise and facilities to provide the highest level medical and surgical evaluation and treatment for patients with complex epilepsy.Click here to learn more. If you would like to help, please visit our giving page.