As I sat at lunch on Wednesday, talking to a fellow mom whose daughter is currently suffering from absence seizures, she shared her story which is new to them. They’re in the waiting phase. Waiting for tests. Waiting for answers. Waiting for a solution. And it broke my heart. Because not too many years ago, we were right there in her shoes.
At 12 years old, our daughter Kalli was diagnosed with epilepsy. Epilepsy is defined as “a neurological condition characterized by recurrent, unprovoked seizures.” No one knew why they started happening. We hoped she’d grow out of them as so many children do. Her neurologist at the time did the best he knew how with trying different medicine and yet they always seemed to come back.
As I was telling her story to my new friend, I pulled up the list below to show how many seizures our daughter Kalli was having back in early 2021-2022. Just revisiting this information brought me right back to the feeling I had every time I had to write another date and time. In the epilepsy world, it’s called “resetting the clock” because everyone hopes that each time is the last time, they’ll ever have a seizure. It was a feeling of despair. Would her life ever be “normal?” How could she ever grow into an independent adult? Would they eventually get worse?
This list was kept in the notes of my iPhone. I’d right down the date and time in my growing list.
As each year passed and a new medication was offered, we watched her personality slipping away. Our once spunky little girl would give us one-word answers about anything good or bad in her life. Everything was “fine.” She had no emotion, good or bad. No highs, no lows, just meh.
During the winter of 2021 I opened my computer to see that Kalli had searched google for treatments or cures for epilepsy which took my breath away. While I was busy waiting for an answer, she was researching more options. I took that as a sign to figure something else out and move from waiting to doing. I do wish I would have done this sooner, but I believe God has a plan and a purpose and this was all part of it.
First, I joined a Facebook group titled “Parents of Kids with Epilepsy” that is 22k members strong and the flood gates were opened. I saw genetic testing, I saw Level 4 Epilepsy Centers, I learned what the term epileptologist means and that there were physicians who specialized in treating epilepsy. Finally, there were options!
We had a telehealth appointment with her then neurologist a few weeks later and I was going to ask him about all these options. Meanwhile, as God was working behind the scenes, our neurologist started the appointment with telling us he’s done all he can do, it’s time to take it a step further. He told us about his epileptologist friend in Tampa to whom he would refer us. I was elated! Nothing was going to stop us from pursuing this avenue and getting help for our daughter.
So off to Tampa we went; 6 times over the course of 8 months for test after test to see what further treatment she was a candidate for. When all of the tests were completed, we were offered two options; the vagus nerve stimulation (VNS) therapy which I like to compare to a pacemaker but for the brain (it involves implanting a small device under the skin in the chest that sends mild electrical pulses to the vagus nerve in the neck) or the LITT, Laser interstitial thermal therapy (a minimally invasive surgical procedure used to treat drug-resistant epilepsy).
One of Kalli’s many tests. This was a 5 day inpatient stay to find our where exactly her seizures were coming from.To just have options was a direct answer to prayer. By now, Kalli was 19 and an adult. She listened as we discussed pros and cons with the physicians, and ultimately, she chose the LIT therapy.
In November of 2022, just before Thanksgiving, we traveled one last time to Tampa where Kalli underwent this therapy. I can picture the waiting room so vividly. Her dad and I sat, waiting, and praying and wondering if this would be the cure for her. After 13 hours and multiple updates from the team, Kalli’s procedure was complete, and we were able to see her. She was awake and a little groggy, but not too groggy to crack a joke. She spent night one in the intensive care unit as a precaution, was transferred to a regular room the next day, and discharged home the day after.
The day of the LITT and the neurosurgeon who changed her life.
Post surgery. Awake and cracking jokes!Her last seizure was November 9, 2022. She’s been off all seizure medication for two years and we got our girl back. After returning home from Tampa, she recovered for a few weeks, went back to work, and decided to pursue a career as a nail technician. She began nail school in January of 2023 and now owns her own business called Kallifornia Nails.
Kalli today. Thriving and Thankful!We are so thankful for a procedure that changed the trajectory of her life, and we are beyond excited to support Ascension Sacred Heart in bringing this option to patients here in our local area. I’d love to personally invite you to play a role in giving kids their lives back, just like Kalli received. And stay tuned as my second book (coming soon) will dig into more of the “God winks” that happened throughout our journey.
How to Take Part – Cat Country Cares for Kids Radiothon
Live on Cat Country 98.7 and at Studer Family Children’s Hospital
Friday, August 15
https://bit.ly/CatCountry987CaresForKids2025
Call during the broadcast to pledge your support: (850) 416 – KIDS (5437)
