Nov 28, 2022, 5:35:29 AM CST Oct 10, 2023, 2:56:47 PM CDT

No Labels, No Limits: Jack and Luke's Story

Jack and Luke’s family, doctors and care team help them live well with cerebral palsy and a rare form of epilepsy

Family picture with Jack and Luke Family picture with Jack and Luke

Jack and Luke are identical twins, but they're different in many ways. Luke is outgoing and likes to be the center of attention. Jack is more introverted. He likes watching do-it-yourself videos and learning how to take things apart and put them back together.

"But he doesn't always put them back together, so you have to watch him," laughs their mom, Jen.

Like all identical twins, they have similarities too. Both 15-year-olds use walkers. Both are non-verbal. They communicate using American Sign Language and Proloquo, a software for people who cannot speak or need help being understood. Both boys experience seizures, though different kinds of seizures. And their journeys with Children's Health℠ began at the same time.

"When they were about 5-months-old and still not making eye contact or tracking movements in the room, they saw their pediatrician, who sent us to the neurologist at Children's Health," Jen says.

Searching for a diagnosis

Jack and Luke had all kinds of appointments and tests in the following months. But there was no simple explanation of what was causing their symptoms.

"At first, I had to know. If I did, maybe I could fix it,'" Jen says. "I felt pure determination to figure it out."

Jack and Luke as babies Jen and her husband Ceasar spent years searching for a diagnosis. Eventually, in 2022, the care team discovered that Jack and Luke have both cerebral palsy and developmental delays. Deepa Sirsi, M.D., Neurologist at Children's Health and Associate Professor at UT Southwestern found that the boys had a rare and severe form of epilepsy called Lennox-Gastaut. But they still don't have an overarching diagnosis – like a genetic condition or syndrome – that explains why. Over the years, Jen and Ceasar have come to see that as a blessing.

"Every diagnosis is a label, and every label comes with limitations," Jen says. "Our boys do have some limitations, but they're smart, fun and intelligent. So we work really hard to set the bar high and not put limits on them."

A care team that goes above and beyond

With every visit, Dr. Sirsi and her team take the time to understand and meet Jack and Luke's individual needs. Jen remembers when Dr. Sirsi asked about nominating the boys for the Make-A-Wish Foundation, which grants wishes for children with critical illnesses.

"Initially I said no. I told Dr. Sirsi that Make-A-Wish was for kids with life-threatening conditions, and what my boys have isn't life-threatening," Jen says. "Dr. Sirsi put her hand on my shoulder, and I could feel her emotion and concern when she gently said, ‘but it's not about you.' That hit me so hard, because it wasn't about me, it was about the boys. And what they have is life-threatening, and I just didn't want to accept it."

Dr. Sirsi nominated Jack and Luke, and they went to Disney World through the Make-a-Wish Foundation in 2016. Jen took her two older sons, too, so they could go as a family.

"It was an amazing trip, and turned out to be the last one we had as a family," says Jen, whose oldest son, Grant, passed away unexpectedly later that year. "In hindsight, God had a plan for us."

Finding the right balance of medicines

Jack and Luke on a sled As Luke and Jack grow, Dr. Sirsi keeps a close eye on their seizures and works with their family to build a treatment plan that's right for each of them. This is always tricky with epilepsy: People need enough medicine to slow down the abnormal brain activity that causes seizures. But not so much that it makes them exhausted or unable to do daily activities.

"As parents, we really appreciate being involved in the twins' care," Jen says. "Dr. Sirsi is the medical expert and we know our boys. If we need to change their medication, she'll talk to us about it far in advance. She'll share different options and recommendations and let us do our own research."

Jen and Ceasar also appreciate that Children's Health makes sure Jack and Luke have the resources they need at school. This includes creating seizure plans, providing doctor notes and other paperwork needed by two teenagers with complex medical needs. And that frees them to spend more time with the twins and their blended family.

"Our love for Children's, the support, the doctors, the nurses, is beyond describable," they say. "They're compassionate. They meet you where you are, which is so important, because as a parent, you panic. It doesn't take away the panic because that's always going to be there. But their compassion and the way they care — it makes all the difference."

Learn more

Children's Health provides some of the most advanced epilepsy care in North Texas. Our team of experts work together to build a treatment plan tailored to your child’s specific needs. Learn more about our top-ranking Epilepsy program.

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epilepsy, patient story, seizure, treatment, neurology

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