From the time that Ellie could walk and talk, she loved to be the center of attention. She and my mother, her “Sugar”, would sing, dance and make up stories and then perform for whoever would watch or listen. Sugar taught her nursery rhymes that she would recite on command before she was even 2 years old and Ellie would be put on display whenever there was an audience. She was not a shy child. When she entered first grade, I noticed a change in her but initially thought that maybe it was because she had started at a new school and didn’t really know anyone or maybe it was just because she was getting older and her interests were changing. She was withdrawn and moody, definitely not my “never meet a stranger” girl. When I started getting notes sent home from her teacher stating that Ellie was being “defiant” and would “deliberately not pay attention and do her schoolwork” I initially reprimanded and disciplined her, but it was so out of character for my child that I started to pay closer attention and remind myself that I knew Ellie better than anyone. My instincts told me that something else was going on. It was not because I thought Ellie was perfect or above being called out at school, but because it was such a change from her normal demeanor. I quickly realized that I she would frequently stare off at nothing or that I would have to repeat myself over and over again to gain her attention. She was quickly diagnosed with ADHD and with some lifestyle changes and eventually medication, her attention span did improve…the staring spells did not. I made an appointment with her pediatrician and thankfully she listened to my concerns when I told her that I thought Ellie was having absence seizures. She immediately sent us to Children’s Hospital of Alabama where Ellie had multiple tests done including an EEG that is used to help monitor for seizures. She had multiple petit mal (absence) seizures during the hour that she was evaluated. She actually had so many seizures that day, that the neurologist on call that read her EEG did not feel comfortable sending her home without medication. That’s where our epilepsy journey begins….she was 7 years old. For the next 4 years, she tried multiple medications, failed multiple medications, was pulled out of mainstream school and began homeschooling at the beginning of the 2nd semester of her 2nd grade year. Her teachers at her elementary school were wonderful and so supportive and just wanted what was best for her. She suffered thru 2nd grade and since I was with her all day every day, I realized that she was still having petit mal seizures nearly every day. So again, meds were changed, tests were completed without answers, but the seizures did not let up. Fast forward to February 20, 2016…Ellie had turned 11 years old only 3 weeks before. We were in a routine of morning and nighttime meds and school in between. I thought that we had finally reached a new normal. On that Saturday morning, we were headed from our home in Pickens County to Northport which is about 35 miles away. One of the most popular routes from where we live involve traveling down a rural road with trees and forest lining both sides of the highway. We had been on the road about 5 minutes when I heard something hit the back window. I looked in my rear view mirror and saw Ellie’s head hitting the window and I immediately knew that my little girl was having her first grand mal seizure. Apparently, the light flickering through the trees as we drove triggered the first of many. I immediately pulled over and ran around to her side of the car. The nurse in me tried to remain calm, protect her airway and protect her from injuring herself, but the mother in me was more terrified than I had ever been in my life. After she stopped seizing, I drove her directly to the emergency department and they confirmed that she was definitely having grand mal seizures as well as the absence seizures. My heart broke for my baby, for what I had dreamed for her, for what she would have to endure and what she would lose. Our new normal was blown to shreds. We tried more medications, keto diets, supplements, strict sleep schedules and many, many other interventions to try to get her some relief, but nothing was helping and no one could figure out what type of epilepsy that Ellie had. She started back to school in a classroom in the 8th grade. I was hoping that this would help evolve her socially and help build her confidence. Epilepsy was trying so hard to steal her from me and I was determined not to let that happen. She was unable to be a normal teenager, didn’t get invited to go places or for overnight stays. I know it was because people were afraid that they wouldn’t know what to do if she had a seizure when she was with them, but it still had an effect on Ellie. Even though it hurt me for her, I completely understood. Her seizures still terrify me and I’ve seen countless episodes over the years. High school is hard period, but Ellie suffered in silence. She tried to hide her hurt, but I know her too well. She didn’t really have any friends because she had become so withdrawn and shy and my heart ached for her. She missed out on so many normal “teen” experiences…she didn’t get a driver’s license at 16 and still has to depend on others for a ride anywhere she goes. She wasn’t able to travel off to school when she graduated. She’s not able to have a job that isn’t local because she can’t driver herself and she wants all of these things so very badly. We have prayed for 13 years for an accurate diagnosis so that her treatment plan could be tailored specifically to her. She has been cared for by many doctors and all have been amazing, but we just could never catch the “right” seizure at the “right” time to accurately diagnose her. Her local neurologist and nurse practitioner referred her to the epilepsy clinic at the Kirklin Clinic in Birmingham, Al. Her new doctor immediately ordered another MRI, which was normal, praise God, and a hospital admission with continuous EEG and video monitoring. She was admitted to the UAB inpatient seizure unit on January 5, 2026. She had 17 seizures the first night and one of them showed her doctor exactly what he needed to see. She was diagnosed with Jeavons Syndrome on January 6, 2026. The beast that has ravaged my girl for the last 13 years FINALLY has a name and we praise God for it. Now Ellie can look to the future! With the right medication combination, possible surgical intervention and other lifestyle changes, we are trying to give her the most normal life possible. This week another prayer was answered when after 13 years and countless waiting lists her application was accepted be the owner of a seizure alert dog. A seizure dog would open up so many possibilities for my girl and help give her the confidence she needs to start living her life. The most important job this dog will have is alerting someone when Ellie starts to have a seizure. Unfortunately, Sudden Unexpected Death in Epilepsy (SUDEP) is a very real, very terrifying possibility. There have been times when I’ve woken up in the middle of the night to her seizing and it scares me to think of what could happen on the nights that I don’t wake up. This dog will be trained to literally help save her life by alerting and getting help when Ellie has a seizure and then staying with her until help arrives. We covet your prayers for healing and most of all for Ellie’s safety and that her seizures are controlled. Thank you for considering!