I will never forget the day Ella had her first seizure. We had just celebrated her first birthday, and she was getting over a cold, but basically it was a normal Saturday. Ella was eating lunch in her high chair when her arm moved up and down a few times, and then her whole little body went limp. My husband and I initially thought she was choking, however he quickly realized she was still breathing. We called 911 and the operator diagnosed it as a seizure. Ella came out of it after a couple minutes, and because she had recently received her immunizations and was fighting a cold, the EMTs thought it was most likely a febrile seizure and therefore harmless. When we got to our local children’s hospital the doctors agreed it was likely febrile. However the arm movements had the neurologist a bit concerned, so he ordered an EEG to occur in a couple of days. It was a long two days of waiting for the EEG, yet we walked in still optimistic that everything would be OK. It had to be, right?!! Then we got the results… Ella had epilepsy.
Our world changed forever. Unfortunately, the day only got worse as Ella seized again once we returned home, so we went back to the hospital, and then she seized again and again. She had to be heavily sedated, and we were admitted to the hospital for observation and an MRI. I can vividly remember thinking everything was so surreal as I sat there and stared at my daughter’s tiny body in her hospital crib so heavily drugged. That was the worst day of my life.
Ella is still battling this awful disease every day. We were initially given encouraging odds that Ella would likely outgrow her seizures… a 70-80% chance! However, since the initial diagnosis, she has failed over 10 different medications and the ketogenic diet. With medication providing limited efficacy, we started to explore a surgical alternative. We traveled to four top-tier medical institutions hoping they would view her as a viable candidate for surgery. These visits typically involved 7- to 10-day stays at the hospital, where Ella’s head was wrapped in EEG leads and tethered to a monitor, all the while being weaned off her meds and sleep deprived in an effort to record as many seizures as possible. Any adult would find these conditions miserable, but for a toddler, they were unbearable. When people ask me about the challenges of having a child with epilepsy, I think of these stays. Watching your child claw mercilessly at EEG leads attached to her head that hasn’t been washed in a week, going through withdrawal from the 20 pills a day she normally takes, sleep deprived and starved, all in hopes that her little body will seize so the doctors can find compelling enough information to perform brain surgery. Most parents pray their child would never have to undergo brain surgery, we prayed ours could. Unfortunately, the doctors did not find compelling enough data to operate.
Faced with limited alternatives, we continue to try new medications, explore genetic research, and try other means of reducing her seizure frequency and accelerating her development. Ella has seizures every few days, and they often last up to 20 minutes. Ella has epileptic spasms, which are very resistant to medication and very detrimental to her development. Her seizures mainly occur at night, which means my husband and I don’t sleep much. We watch Ella’s monitor as closely as possible and listen for every little sound. We are just used to being exhausted at this point. Her days are filled with school and therapies, but we still make sure to include fun time for her to behave like a seven-year-old, even though she functions at the level of someone much younger.
While Ella may have significant developmental delays, she is one of the happiest children I have ever met. She truly touches the lives of everyone she meets with her indelible spirit. She has taught us what is important in life, and taught us all a lot of patience too! Luckily, she enjoys doctor and hospital visits and makes the most of each situation, even offering up her arm for routine blood draws without shedding a tear. She is truly my inspiration.
It is so hard as a mom to watch her become more and more delayed, and to not know what is causing it or to have any idea how to fix it. Our lives changed forever that day, and we hope that there is a cure out there for Ella, and all the other children who suffer from uncontrollable seizures and devastating developmental delays. I hope one day to not have to count how many days it has been since her last seizure, to not have to count out 11 pills for her to take with breakfast and then again at dinner, and to not have to count the years she is behind her peers developmentally. Thank you, CURE, for doing all you can to help us and other families stop counting the bad things, and start counting the days of seizure freedom!