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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Through it all, laughter has been Preston’s best medicine, and he used it to draw smiles from his nurses during his most recent hospital stay following surgery at Cook Children’s Medical Center.

“He had a rubber chicken, and when the nurses would come in, he would just lay there while recovering from brain surgery and squeak the chicken,” said Preston’s mother, Meghan Czarobski. “He brings so much joy and light to our lives. Not many people can always have a smile on their face despite having seizures every day. He is the most resilient kid. He lets us recognize the small stuff, even on the darkest days, and it's the little things that count. He shows us that by his personality.”

But caring for Preston is a heavy, exhausting and financially draining responsibility. He requires around-the-clock care. For years, Meghan and her husband, Arty, traded work shifts and sacrificed sleep so that Preston was never alone. One would work during the day and the other at night to help keep the family afloat. The stress took a toll on their entire family, including their three other children ─ Payton, 9, Piper, 8, and Parker, 5.

The Czarobskis had commercial insurance, but their policies did not cover critical services that Preston and the family needed to thrive, not just survive. Resources like in-home nursing and respite care were out of reach for the family, who would have had to pay out-of-pocket for these services. On top of that, the couple had to take out additional policies for Preston just to ensure he could continue to receive care at Cook Children’s Health Care System ─ his long-time medical home.

“We were just doing it on our own. No in-home nursing care, and we were having to pay for everything, like durable medical equipment supplies, out of pocket,” Megan said. “It was a struggle. Honestly, we were in survival mode for most of those years.”

Then, the Czarobskis discovered Cook Children’s Health Plan, where they were able to enroll in Texas’ STAR Kids Medicaid program for medically dependent children ─ and it changed everything.

The family no longer has to jump through insurance hoops to see their Cook Children’s physician of choice. Cook Children’s Health Plan has a network of more than 1,400 primary care providers and more than 2,500 specialists, many of them members of Cook Children’s Physician Network. Thanks to Cook Children’s Health Plan, Preston now has in-home nursing, respite care, and critical speech, occupational and physical therapy sessions, giving Arty and Meghan the break they need to rest and recharge, and allowing them precious time with their other children.

“It gives me peace of mind,” Meghan said. “Preston requires one-on-one support, even when he walks, because he could have a drop seizure at any time. Knowing that he has a nurse with him, I can work during the day and spend time with my other kids. Even if it's just doing the simple things like play a game with my kids or cook a meal for my family. It has given me an extension, and the benefits from Cook Children’s Health Plan have just been such a blessing to our family.”

But all of it – the collaborative and comprehensive care from trusted physicians, the in-home nursing care and therapy services, the medical equipment for Preston’s comfort and safety – is in jeopardy, as the Texas Legislature is just days away from allowing the largest Medicaid upheaval in state history. It will unravel the lifeline that allows the Czarobski family to survive, and even thrive, against overwhelming odds.

In 2024, the Texas Health & Human Services Commission (HHSC) denied contract renewals to several Medicaid providers, including Cook Children’s Health Plan and two other non-profit, Texas-based children's hospital plans. Despite their 60-plus years of proven, high-quality care, HHSC awarded the multi-billion-dollar Medicaid STAR/CHIP contracts to several publicly traded insurers beholden to out-of-state shareholders.

Unless legislators act now, 1.8 million Texas children and pregnant women, including 125,000 North Texas families like the Czarobskis, will be forced off their current health plans and into unfamiliar, for-profit insurers headquartered outside Texas. The consequences will ripple even further — costing Texans nearly 2,000 jobs and draining millions in taxpayer dollars.

If legislation isn't adopted immediately, vulnerable families could lose their lifeline to pediatric specialists, hundreds of local jobs will be eliminated, and taxpayers could possibly pay the price through ER overcrowding and higher uncompensated care costs when families have a gap or lapse in coverage as a result of this disruption.

“I'm going to try not cry, but it would be devastating to our family because it's literally like our right arm, and an extended part of our family and of Preston’s health care” Meghan said. “With the type of epilepsy he has, it is severe and progressive which can lead to worsening neurological outcomes over time, so as his needs increase, to lose something so valuable, it would be devastating to our family.”

The Czarobskis, and thousands of Texas families like them, need the Texas Legislature to do the right thing and adopt a law this session that extends existing contracts through 2027, preventing immediate upheaval. Lawmakers should preserve the right for families to stay with the health plans they trust to provide vital access to the medical services and physician relationships they depend on every day. 

For Arty and Meghan, it’s not just about Preston, but about Payton, Piper, and Parker, too.

“I want lawmakers to really think about the Texans that they are impacting, not just the patients, but the whole entire family,” Meghan said. “As a mom whose child’s life depends on the care and services provided by Cook Children’s Health Plan, my child is not just a number on a budget sheet. Behind every number is a child with dreams and a family fighting for support, stability, and hope for their child with complex medical needs. Like thousands of other Texas families, we rely on Cook Children’s Health Plan. Cutting it would be devastating to real people and strip away lifelines for so many families just like mine. I urge lawmakers to choose compassion. Chose humanity. Choose to protect Texas children and families so they can continue to get their dedicated care through the Cook Children’s Health Plan.”

To learn more about how you can help save Cook Children’s Health Plan, go to savecookchildrenshealthplan.com.

Still, Dr Keator takes precautions.

She states, “I suffer from migraines, as due several of my colleagues. Most migraine sufferers have busy lifestyles, and a main trigger is fatigue. Therefore, what I tell my patients and also practice myself: exercise regularly, stay well hydrated, eat well and get adequate sleep. Another very important recommendation is to limit time on electronic devices. I do my best to minimize migraines and headaches by taking frequent computer breaks.”

Most professional and educational activities are spent on some sort of electronic device, and in today’s world, introduction to electronic devices starts at a very young age. Media is everywhere and it is competing for children’s attention.

Statistically speaking, over 75 percent of children have some degree of hand-held or electronic devices. A great portion of the child’s day is spent on these devices, which by default, take away from other activities. Headaches and/or migraines in children can be exacerbated or increased due to spending excess time using electronic devices: watching TV, video games, texting, playing on tablets, etc.

The concern is that the time spent (and the content) on the devices may interfere with other regular childhood activities and natural sleep/wake cycle, especially when used in excess. Dr Keator states, that when children use electronic devices in excess, this leads to interruption in sleep which will lead to fatigue, and for many children it can lead to headaches/migraines. It can also lead to attention problems, school difficulties, eating disorders and obesity. Prolonged time spent on electronic devices interrupts other activities: homework, dinner time, family time, exercise, and sleep.

The American Academy of Pediatrics recommends limiting or completely eliminating screen time for children under the age of 2 years. Then as children get older, media is slowly introduced. For children age 3-5 years, limit to 30-60 minutes; children age 6-9 years 60-120 minutes a day; and for older children over 120 minutes is allowed.

But let’s be realistic; these time limits no longer fit in our current world of technology.

“Technology is here and electronic devices are a multi-billion dollar industry and it is not going anywhere,” Dr Keator states. “In neurology, our recommendation is time limits. The younger you are, the less time that is allowed. However, everyone needs breaks regardless of the age. Try to limit time on electronic devices to 15-30 minute increments followed by breaks. During the breaks, I recommend doing something outside, spending time with friends or family, or just resting; then resume activity on the particular device.”

Dr Keator does acknowledge that many schools are incorporating computers or touch screens into the academic curriculum. For children who are migraine or headache suffers, she recommends getting up and relaxing the eyes and giving the brain time to rest.

“It’s a balance,” she emphasizes. Parents and teachers have to work on positive media/electronic use with time limits and breaks. Media/electronic devices should not be in the bedroom and this includes smart phones. Make dedicated family time without electronics. When electronics are used, make sure it is monitored and make it educational as much as possible.

More about Dr. Keator

Dr. Cynthia Keator joined Cook Children's Neurosciences in July 2012. She is board-certified by the American Board of Psychiatry and Neurology with special qualifications in Child Neurology and sub-specializes in pediatric epilepsy. A good portion of her clinical practice in spent in the Epilepsy Monitoring Unit at Cook Children's Medical Center where she diagnoses and treats patients with epilepsy. 

Dr. Keator is a native of Fort Worth where she was raised and attended Trinity Valley School for 13 years. Uniquely, she volunteered at Cook Children's when she was in high school. "I can truly say that it was my volunteer experience that attracted me to pediatrics andCook Children's. Now having finished my training, it was an easy decision to choose Cook Children's". Dr. Keator completed her undergraduate training at Texas A&M University and then obtained her medical degree at the University of Texas Health Science Center at Houston.

Dr. Keator's husband is also a native of Texas. They live in Fort Worth with their German Shepherd. Dr. Keator enjoys spending time with her family who still reside in the DFW area.