Will today be a good day or will Kailee have seizures? And how many will there be? Zero? Dozens? Hundreds?
The Gibson family wakes up with these thoughts every morning. It’s been their daily reality since December 18, 2015.
That was the day that their daughter – an over-achieving, fiery 11-year-old who loved to sing and dance – had her first seizure. She had been experiencing a persistent fever and flu-like symptoms for a week. On this day Kailee started slurring her words and acting confused, so they took her to Children’s Hospital Colorado. By the time she got there, Kailee couldn’t remember how to get out of the car or the year she was born or her father’s name. When they finally made it inside, Kailee had her first seizure.
Within a few days, Kailee’s condition worsened. She started having so many seizures that she was placed in a medically induced coma to slow her brain activity. After three weeks, she was able to wake up. But nothing would ever be the same.
Balancing seizure control and quality of life
Kailee was diagnosed with a seizure disorder known as Febrile Infection-Related Epilepsy Syndrome (FIRES). The triggers of her seizures are unclear – at times they seem linked to diet, exercise or weather, but it’s inconsistent. Kailee will go a few days without a seizure, often followed by a flurry of them.
“It’s maddening,” said Natalee, Kailee’s mom.
FIRES is very rare, according to Dr. Tim Benke, Director of Research at the Neurosciences Institute at Children’s Colorado. True to Kailee’s experience, FIRES typically begins shortly after a flu-like illness and is defined by very frequent seizures – some days Kailee has one every 15 minutes.
“She is the strongest person I know,” Natalee said. “She works so hard. She tries to overcome what is hurting her. The seizures exhaust her and the medicine has side effects, but she stays strong.”
Kailee’s type of seizures do not respond as well to conventional anti-seizure medications, which have a slew of side effects, including dizziness, nausea, vomiting, fatigue and difficulty with muscle coordination. Kailee’s team at Children’s Colorado has tried various drugs and therapies, but are still searching for the right regimen with the greatest seizure control and fewest side effects.
“The team at Children’s Colorado believe in Kailee and don’t pigeonhole her in her diagnosis,” Natalee said. “They believe in our daughter and that she is better than this. We have to believe that our firecracker of a human being is still in there.”
Hope in research
Dr. Benke is determined to help patients like Kailee find long-term relief. In his lab at the University of Colorado, he studies how the brain rewires after a seizure. During a seizure, receptors in the brain become excited. Afterward they do not properly “shut off,” so if there are frequent seizures, the synapses never de-sensitize. Dr. Benke has discovered that this can cause damage to the developing brain.
Thanks to a gift by the Ponzio Family Foundation in 2015 that established the Ponzio Family Chair in Pediatric Neurology Research, Dr. Benke has been able to further develop a new drug that helps brain receptors to de-sensitize more quickly following a seizure. Early results are promising, and the drug may soon be tested in clinical trials.
“Philanthropy has been instrumental in bringing this drug closer to a reality,” said Dr. Benke. Until then, Kailee’s parents continue to work to provide Kailee with the best-possible quality of life. They visit Children’s Colorado regularly to manage Kailee’s seizures. She also goes to speech, music, and occupational therapies. On good days, there are glimpses of the old Kailee, a laugh here or a sassy comment there.
“We absolutely believe at our core that we will find healing someday. I can’t tell how that will work, but we have to believe, and we will continue to push until we find something that comforts her,” Bryan said.