MIAMI-DADE COUNTY, Fla. – An epilepsy diagnosis affects one in every 26 people.
Jose Saenz was diagnosed with epilepsy as a child. Now a teenager, he has a new medical device that helps him manage his seizures and improve his quality of life.
Maria Hernandez is the mother of 16-year-old Jose. She said since first grade he would have as many as 10 seizures a day, with some lasting as long as 30 minutes.
By third grade, it was so bad that Jose couldn’t attend a regular school.
“At that time, our lives changed forever,” said Hernandez.
After multiple major brain surgeries, she didn’t know if Jose could ever have a relatively normal life. Then she learned about RNS.
“We did a lot of research,” Hernandez said. “We called epilepsy alliance.”
Last August, a team of Nicklaus Children’s Hospital doctors put an RNS device into Jose’s head.
“The responsive neurostimulator is a device that is implanted through a craniotomy, which is an incision through the scalp into the skull,” said pediatric neurosurgeon Dr. Shelly Wang.
RNS can treat seizures that can’t be controlled by medication or other brain operations. Think of it as a pacemaker for your brain.
“It can then be taught to recognize the pattern of a seizure and then trained to stop the seizure by delivering electrical stimulus,” said neurosurgeon Dr. John Ragheb.
Dr. Marytery Fajardo explained how the device collects information from Jose’s brain.
“At home every night, Jose downloads the data using the wand hovering over the site of the device into the computer and then uploads it from the computer to the cloud,” said Dr. Fajardo. “We study that data and we look to see how the seizures are evolving and help inform how we should be programming the stimulation.”
Hernandez said the results have been life-changing. Jose still has seizures, but they’re not as long, scary or debilitating as before. He can have a more fulfilling life.
“It’s been a journey. It’s been a lot of tears, a lot of nights, no sleeping, but I think we’re in a good path,” said Hernandez.
The 2024 Walk the Talk for Epilepsy will take place Saturday at Zoo Miami, located at 12400 SW 152nd St.
Local 10 News reporter Saira Anwer will serve as the emcee. For more information about the walk, click here.