A Mother's Intuition, A Doctor's Care

Colton Ragsdale is done with reading time. Gayla Baldacci, special education teacher at Jo Kelly School, gives him his eye-gaze tablet, a device that allows users to control it and communicate using their eyes. Colton tells her whether he wants to watch "Mickey Mouse Clubhouse" or "Team Umizoomi." It is his reward after a day of activities and learning at Jo Kelly, a Fort Worth Independent School District campus for medically fragile children.

 Colton was diagnosed with Dravet Syndrome just before he turned one.

 “We didn’t know anything about Dravet,” said Mindi Ragsdale, Colton’s mom.

 As a newborn, Colton passed all screenings, but at just a few months old, he began having seizures lasting up to 20 minutes. The infant was airlifted from his hometown of Hobbs, New Mexico, to Lubbock, where he was diagnosed with epilepsy.

Driven by a mother's intuition, Mindi began researching what was causing the seizures and learned about Dravet syndrome, a rare disease. Dravet is estimated to occur in 1 in 15000. Her pediatrician recommended Cook Children's Medical Center in Fort Worth, one of the largest clinics in the United States specializing in Dravet Syndrome.

 Scott Perry, M.D., head of Neurosciences at the Jane and John Justin Institute for Mind Health at Cook Children’s, explains that Dravet syndrome typically begins in an otherwise healthy child around 6 months old with the onset of seizures.

 “When we went in, it all just fell right into place because Dr. Perry had already treated kiddos with Dravet. It was like it was all meant to be,” recalls Mindi.

 Dr. Perry listened to Mindi and did genetic testing. Dravet syndrome is most often caused by a variant in a gene called SCN1A.

 Colton was admitted to the hospital, where Dr. Perry monitored his seizures. It was Dr. Perry’s demeanor and knowledge that helped put Mindi at ease.

 “He was just so down to earth and just so knowledgeable,” said Mindi.

 Dr. Perry says listening to parents is imperative when trying to find a diagnosis.

 “Every time you see them, it is an opportunity to hear the story from the very beginning to where you are now,” said Dr. Perry. “Sometimes you have to step back and see the whole story.”

 For years, the family traveled from New Mexico to Fort Worth for medical appointments. In 2023, the Ragsdales moved to Fort Worth. They say it changed the family’s life.

 “It’s like we didn’t have to live in a bubble for the first time in five to six years,” said Mindi.

 Going to a new place could trigger a seizure, making the family cautious about outings. Now, just 20 minutes from Cook Children’s Medical Center – Fort Worth, the family has been able to explore new places together.

 “We've learned through the therapies at the school how to help him cope,” explained Mindi.

 At 11 years old, Colton began attending Jo Kelly full-time, a significant milestone for him.

 Jo Kelly School

 Colton begins each day at Jo Kelly by checking his communication schedule. Each picture card visually guides him through his school routine, from washing his hands to reading.

 “I feel my job here is to not only make the students' life better, but to make their home life better,” said Baldacci.

 That impact is already being felt. Colton, who previously communicated primarily through screaming and yelling, now uses an eye-gaze tablet to express himself.

 “If he wants to do more of something, then he can look at that and he can do more of it,” said Mindi.

 Baldacci adds that Colton recently met a communication milestone: He was able to tell her to stop an activity to move on to another.

 “For the first time, he finished and touched [the card] without pushing the whole thing,” said Baldacci.

 Connecting families to resources

 Mindi credits Cook Children's with being a bridge to local resources. She learned about Jo Kelly from another mom while waiting for Colton's appointment.

 “I was asking her about her wheelchair because Colton had a regular wheelchair,” said Mindi.

The wheelchair was provided through Jo Kelly, which led Mindi to begin the enrollment process. The school, which focuses on medically fragile children from ages 3 to 22, has two teachers for three students, a nurse, and three medical assistants on campus. A specialized cafeteria on campus focuses on preparing food based on students' needs.

 “His syndrome is so complex it was important to me to have somebody medically there at all times,” said Mindi.

 It was the reassurance she needed, and Dr. Perry encouraged her to enroll Colton.

 "It's not just my job to help pick the right medicines and treatments, but when they need these services, they need somebody generally to advocate for why the service is a value to them and how it's going to help them," Dr. Perry said.

 The Ragsdales say their move has been a night-and-day change. Enjoying making memories as a family, Mindi shared that Colton had his first photo with Santa, an opportunity the school set up for the students.

 It was a small moment that meant a lot.

 “When we would have been doing that type of stuff, we were fighting his seizures and all of his medical issues,” shared Mindi.

Students have a routine that includes reading, circle time, time on the handicap-accessible playground, cooking class, and time in the sensory room.

"It's really neat that Jo Kelly tries to make it as normal as possible," Mindi said. "Even though their lives are so far from normal, they still try to incorporate all that."