Meet Kaylee Hill, a brave 12-year-old from Orlando who has faced a challenging journey with epilepsy. Diagnosed in January of 2024, Kaylee’s story highlights the resilience, hope, and incredible support she received from Nemours Children’s Hospital, Florida. Here, Kaylee and her mom, Kaci, share their experiences to inspire and support other families navigating similar paths.
Kaylee’s journey began when Kaci noticed something unusual about her daughter’s speech. Initially, it seemed like Kaylee was tired, but Kaci knew something was wrong when the episodes continued. “I immediately sent a message to the neurologist she was established with for migraines, Dr. Rossi. The episodes started to take place more often over the next few days, and so an MRI and EEG were scheduled.” After a series of tests, including MRIs and EEGs, Kaylee was diagnosed with epilepsy caused by a lesion on her uncus and amygdala. “It was quickly relayed that surgery would be needed and that we would need to work with an epileptologist for the next steps as surgery prep was done in phases. The next few months were a lot of testing, but it was a great time that she connected with Dr. Gedela and then Dr. Olavarria as the surgery got closer.”
Before and during her treatment leading up to surgery, Kaylee’s diagnosis had a profound impact on her life. Before starting her medication, she experienced between 50 and 75 smaller seizures, along with 5 to 10 larger ones. After starting her medication for seizures, both the frequency and severity of her episodes decreased significantly. However, she continued to experience 5 to 10 absence seizures daily.
As an avid cheerleader, Kaylee shares, “This made life harder because cheer, the sport I have done since I was 5, I could no longer do with how fast everything was changing.” The introduction of medications was another challenge, with side effects making daily life even more difficult. Kaci adds, “We started treatment almost immediately, but life became so different for her once meds were started. She had never been on meds in her life, and then two with high doses were added in a short time frame. The side effects from that alone were a lot, but her being pulled from cheer was very emotionally challenging for her because cheer was always her way to cope with life, and as she was facing the hardest thing, we had to take it out of her life temporarily.”
Kaylee shares her experience with her Neurology team at Nemours Children’s Hospital in Florida, saying, “I loved how kind all of the nurses and doctors were and how patient they all were. During all of this stress, Dr. Gedela took the time to explain everything to me.” From a parent’s perspective, Kaci emphasizes, “They are all so incredible and make Kaylee feel heard and as comfortable as possible in a not-great situation. Her doctors speak to her at her level and will keep explaining until she understands it. There have been a TON of emotions in this journey, and they are so patient as she works through them.”
As Kaci’s visits to Nemours Children’s became more frequent, the medical team has had a positive impact through Kaylee’s treatment. Kaci mentions, “We have become regulars at Nemours over the last months, and she loves seeing the familiar faces and knowing they remember who she is. We had an EMU [Epilepsy Monitoring Unit] stay in March and then in mid-July for her SEEG [Stereoelectroencephalography, a minimally invasive surgical procedure to help identify the source of seizures and determine if surgery is an option], and they took the time to give her the same room and even make sure some of her nurses were the same, so it was something familiar. Her being one of the first to go through all of this process has been fun for her to grow a great relationship with so many!”
Determined to turn her experience into a source of support for others, Kaci shares her daughter Kaylee’s hopes: “She is looking forward to being a part of the program for the long haul and be a help to everyone else that will do these same things. She has a plan to start a fund for all the others behind her to have goodie bags with all the things she wished she had if she gets to come meet any of them as they start the process she is in now.”
Kaylee has been the first patient to successfully complete a SEEG at Nemours Children’s Hospital in Florida. Kaci shares, “Honestly, her doctors have earned so much of my trust I never even gave it a second thought that she was the first. It went flawlessly, and you would have never known that was the case. Rosa was used [ROSA ONE® Brain is a robotic platform to assist surgeons in planning and performing complex yet minimally invasive neurosurgical procedures], and while that was a little scary for Kaylee to process — a robot completing her surgery — she knew the two she has grown to trust so much were in there with her. We were aware every single step of the way (so thankful for the text updates) and knew what to expect at every point.”
Admitting into the surgery the day before such a huge procedure was filled with emotions. Her mom described it as, “full of emotions that almost had the same feeling in the air as what you feel as you prepare for a huge hurricane heading your way. The way the air feels calm, and the hours seem to move slowly but yet speed by at the same time.” That evening, after they had been checked in and her labs were drawn, Kaylee had her last opportunity to get out and get some fresh air for a bit. Her mom recalls, “I will never forget the few minutes of a walk we got to take the night before.” The surgery was about 5 hours and successfully went as planned. Her mom recalls, “Seeing Kaylee after brought a sense of relief, and her purple bow they made out of the bandage was such a sweet touch. To have her wake up and speak as if she did not have pieces of her brain removed was mind-blowing!”
They stayed in the hospital for about eight days after, and Kaylee’s mom recalls how those days had some ups and downs. Her mom shared, “Some days were hard — I was not fully prepared for seeing her struggle to find words and her memory be altered. I was so beyond thankful for the entire medical team that continued to be there with us in those ups and downs. Her recovery has gone so well!”
Kaylee has now completed her entire surgery process, and at six weeks out from her final resection surgery, she appeared almost back to baseline. Her mom, Kaci, remarks that by looking at her, “You would never know she had surgery so recently, let alone brain surgery.” Reflecting on the journey, Kaci shares, “The first surgery was scary because it was the first time ever having anesthesia, any surgery, especially a six-hour one. Kaylee seemed to get back to ‘normal’ well after the first two, so when the third big surgery arrived, she was ready to put those big pieces behind her and have some relief in her life.” Kaylee has shown remarkable resilience, bouncing back well after each procedure. Aside from some lingering short-term memory loss, she is essentially back to her usual self and, most importantly, has remained seizure-free. As her mom shared, “She has remained seizure-free, and as odd as it might sound, that took some adjusting for her. She had been so used to living life with them that she is now getting used to life without them again.”
Kaylee advises other patients to trust their medical team and maintain a positive mindset. She says, “Know that your doctors, nurses, EEG techs, etc., have your best interest in mind. I know it is hard to think positively, but mindset is key. Know that you are strong, and you will get through this!” Kaci encourages parents to trust the doctors at Nemours, acknowledging the thorough preparation and care they put into each patient’s treatment plan. “As hard as the process is, the team at Nemours is incredible and takes the time to make a safe plan. The process might seem slow, but trust them with the time it takes. I know how hard it is to put so much trust in the doctors for such a big surgery, but know that if they recommend it, they will have spent hours together discussing and preparing before surgery ever gets here.”
Kaylee is now three months post-surgery, and her mom shares, “We have learned to live life again without seizures a little more easily. Kaylee has returned to school and continues to improve academically. Her short-term memory and word finding, while not fully back, have drastically improved, and she continues to amaze us, even happy to see the spicy teenage girl attitude some days.” During her three-month post-op appointment, Dr. Gedela and Dr. Olavarria confirmed Kaylee’s release to return to the sport she was greatly missing. “There were lots of tears and hugs. Per her request, we drove straight to her gym, and after a quick stretch and warm-up, she was throwing tumbling passes as if she had never missed a day. It was almost like you could watch her stress finally easing. Crazy to watch after just three months from BRAIN surgery,” highlights Kaylee’s mom.
Kaylee Hill’s journey is a testament to the strength and determination of young patients facing similar neurologic health challenges. With the support of Nemours Children’s Hospital, Kaylee is well on her way to recovery, ready to embrace a future full of possibilities and hope. Her story inspires other families, showing that overcoming such challenges is possible with the proper care and support.
