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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Discover how rare genetic epilepsies led him to international recognition, why Cook Children's stood out as his perfect home, and how his dedication to research is transforming the future of neurological care. Plus, we explore how art and neuroscience intersect in a way that heals, inspires, and brings the community together.

Join us on Spotify, Apple Podcasts or YouTube for a powerful conversation about innovation, perseverance, and the human connection behind medicine.

After all, Balderamos watched the doctors at Cook Children’s try every other treatment option available for her son, Aaden, before deciding that surgery was the correct choice.

Aaden was diagnosed with tuberous sclerosis complex (TSC) at 4 days old. TSC is a genetic disorder that causes benign, or nonmalignant, tumors to form in many different organs in the body. The brain, heart, kidneys, skin, lungs and eyes are some of the more critical locations where these tumors appear. When tumors form in the brain they can cause seizures, developmental delays, intellectual and mental disorders. TSC is also considered a leading cause of medically-intractable epilepsy and autism.

At 4 months old, Stephanie captured on video Aaden’s first focal seizure. She sent the video to Aaden’s neurologist Scott Perry, M.D., an epileptologist and medical director of Neurology at Cook Children’s. The next day Aaden started on a medication to treat those seizures. After a week, that seizure type stopped, but more would soon arise.

Four months later, infantile spasms started and they have continued in some form to this day – intractable to every therapy Dr. Perry has prescribed.

Aaden has tried several medications for his seizures and at times he reacted poorly to the medication. Dr. Perry talked to Stephanie about surgery early on, but she asked for other options.

Dr. Perry placed Aaden in a research trial of cannabidiol (CBD) oil for seizures in TSC. While he had seen success for other patients, the trial was not a success for Aaden and he needed other treatment options.

Like many with TSC, Aaden’s epilepsy has been intractable to therapy. The tumors in Aaden’s brain cause between eight to 10 seizures on average per day. Treatments thus far haven’t achieved the results that both Dr. Perry and Aaden’s mom had hoped.

“Intractable epilepsy, or the failure to achieve seizure freedom after trials of two appropriate chosen and dosed antiepileptic drugs, has profound impact on quality of life, psychosocial function, cognitive function, and mortality risk,” Dr. Perry said.

For these patients, surgical therapy, consisting of localization and subsequent resection/ablation of the epileptogenic zone can result in favorable seizure reduction and for many, seizure freedom. Among patients with intractable epilepsy, an estimated 5-50 percent may be candidates for epilepsy surgery.

"The decision to perform epilepsy surgery as treatment is a difficult process,” Dr. Perry said. “First we have to make sure we know exactly where in the brain the seizures are coming from, then we need to know the function of the part of the brain we plan to operate on. The goal is to make the seizures stop while avoiding an injury that would hurt the child’s speech, cause weakness, or cause loss of sensation.”

Aaden’s treatment has been a series of a couple of steps forward and then three more back. Now surgery remains the next option. David Donahue, M.D., a neurosurgeon at Cook Children’s, will operate on Aaden at some point in the near future in hopes to control Aaden’s seizures better, but a lot of work has to be done before he is ready for the operating room.

“I wanted to try other options before, surgery,” Stephanie said. “I was scared to think of surgery. I wanted to see if anything else could work. Sometimes I regret not doing the surgery earlier. But then I think, well at least I tried everything else before making that decision.”

Stephanie says she won’t allow herself to think about the surgery yet, but that’s just so she can continue with her daily life. She is the mother of Aaden and his older brother Eli, who is 8.

“When I think about the details of the surgery, it makes me sick to my stomach. I haven’t thought about it much,” Stephanie said. “When it pops into my mind, I push it to the side. That’s the way I handle it. I get really nervous. I will think about it about two days prior to the surgery when I have to get everything together.”

For more on this topic:

• The Art of Treating Epilepsy: Diagnosis and Treatment
• The Art of Treating Epilepsy: The Team Behind Aaden's Care
• Comprehensive Epilepsy Program
• Meet our Neurosciences Team
• Choosing Our Neurosciences Center