For the rest of our lives, we will never forget February 2, 1999. It’s a day that forever changed our lives.
While getting ready for work that morning, we heard Stacy cry out. We went to her crib and found her limp and moaning. Thinking she was getting sick, we gave her Tylenol and put her back to bed. Hours later, we began to learn what was really happening. At about noon that day at work, we received a call that Stacy was being rushed to the emergency room. The paramedics said she was having a seizure. By the time we arrived at the ER, Stacy was on a breathing machine and fighting for her life. This seizure (her 2nd of the day, we now realize) lasted 45 minutes. Stacy was 7 months old.
For the next 4 days, we didn’t leave Stacy’s side. We finally left her for an hour to go buy a baby video monitor so we could hear and see her at night. When we arrived home, we were confused. A neighbor was sitting in the house with our other daughter, Cameron, and Stacy was gone. We were absolutely stunned to learn that Stacy had had another seizure and was again rushed to the ER. I will always remember running into the ER and crying like I’ve never cried before. It was another long seizure, again, 45 minutes.
Unless you’ve lived it, it’s very hard to explain how long one minute, let alone 45, feels while you stand there surrounded by doctors and nurses, watching your child seize. Later that night, Stacy started the first of many, many epilepsy medicines.
Looking back today, we’re not sure we could ever have imagined the next 9 years and the difficult road Stacy has had to endure. Thank goodness we didn’t know then what we know now.
Since February of 1999, Stacy has had over a thousand seizures, sometimes over a hundred in a day. We’ve tried over a dozen medications, two surgeries, a special diet, a PET scan, numerous MRIs, CAT scans, and extended around-the-clock EEGs. Each time, we looked for relief, seeking some kind of answer. It was so incredibly frustrating to hear, time after time, the top doctors in their field tell us Stacy’s tests were “normal”.
Seeking some kind of help for her devastating seizures, we’ve tried over a dozen medications. Unfortunately, most of them created new and different seizures or unlivable side effects.
Over the past 9 years, Stacy has experienced many types of seizures. She has grand mal seizures, where her entire body shakes. She’s had partial complex seizures affecting only part of her body, sometimes progressing to her entire body. She’s had absence seizures where she simply stares into space or her eyes roll to one side. She’s had myclonic jerks where her body jerks quickly and abruptly for 1-2 seconds. And no matter how many or what kind we see her experience, each one saddens us. Ask any parent, you never get used to watching your child experience a seizure.
The thousand plus seizures she’s endured have had a lasting effect on Stacy’s brain. Today, Stacy is ten years old; developmentally she is equivalent to a three year old. She can’t read or write. She doesn’t know her colors. She needs assistance with most daily life skills. She does learn new things, but it comes at a very slow pace to her, and each seizure takes her a step back. As difficult as it is to watch the physical symptoms of her seizures, by far, the biggest impact has been the permanent damage to her brain.
In August of 2007, Stacy was diagnosed with Dravet Syndrome, a progressive epilepsy syndrome defined by severe and uncontrolled seizures, significant development delay, progressive development issues and generally a shorter life span. Because no medications in the US have helped Stacy, we are now trying medicines from France and Canada, searching for answers.
If and when you meet Stacy, you’d never know the struggles she’s endured. She is the most happy go lucky child. Her beautiful blue eyes and her wonderful, infectious smile will melt your heart. She loves to play ball (though she struggles to catch it), watch her favorite Brio train go round and round the track, be pushed as high as possible on the swing, and simply hold your hand and go for a walk.
Because Stacy has shown us so much strength and endurance, it has made us push for better solutions for all children with epilepsy. We hope and pray that one day, no child will ever need to endure what our little girl has had and will continue to endure. It is her example that has set our determination. We will never give up. And our work will not be done until we have helped find a cure for epilepsy.