Safeguarding Stability: Local Couple Calls on Lawmakers to Save Family’s Lifeline

Preston Benjaman-Sewell loves to make others laugh even in the midst of his own personal challenges. The 15-year-old from Lake Dallas has autism and Lennox-Gastaut syndrome, a rare and severe form of childhood epilepsy that often does not respond to medications and can cause brain damage and developmental delays. In 2021, he survived a stroke following a brain procedure. To help reduce the frequency and severity of his seizures, Preston has undergone a vagus nerve stimulator implant and, in March 2025, a corpus callosotomy, in which the nerve fibers connecting the two hemispheres of the brain are partially or completely severed to reduce seizure activity. Preston sees nine different physician specialists at Cook Children’s Medical Center, including one for his severe obstructive sleep apnea.

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.