08/26/2025
Meet Kaci, one of our new parent support navigators!
"My daughter Kaylee began having seizures at age 12. At first, we thought she was just tired—but within days, she was having up to 100 seizures a day. She had to stop competing on her cheer team, which was heartbreaking for her. After a whirlwind of tests and medication trials, we learned she had a brain lesion causing drug-resistant epilepsy.
In July 2024, Kaylee underwent epilepsy surgery - a left temporal resection that removed part of her brain, including the hippocampus, uncus, and amygdala. She was the first patient at Nemours Orlando to have a SEEG and resection using the ROSA robot. It was a huge decision and a scary time - but one we don’t regret.
Today, Kaylee is seizure-free. She’s back in school, back to tumbling, and slowly feeling like herself again. Recovery brought challenges—mood swings, memory struggles, and plenty of emotional ups and downs—but just recently, she told me she’s glad she had the surgery. That moment said it all. We have our girl back—without the constant fear of what the next seizure might bring.
I know how lonely and overwhelming this journey can feel. But once you’re on the other side, looking back, even the hardest days start to feel worth it. I volunteer as a Parent Support Navigator to walk alongside other families, offer support, and remind you: you’re not alone."
Languages spoken: English
What parents have to say about Kaci:
“Talking with Kaci was incredibly helpful to me as our family prepared for my son’s SEEG and surgery. It was good to talk to someone who really understands what it’s like to go through this process… I felt free to ask all kinds of questions on issues ranging from logistical to emotional – not only was Kaci able to give me a solid sense of what to expect, but she also totally understood the dilemmas and anxiety I felt.”
5 Stars! ⭐️⭐️⭐️⭐️⭐️
If you want to connect with a parent who's been there, sign up here - https://ow.ly/HSmo50WLXrG
