My mom and dad were honored at the Epilepsy Foundation Eastern Pennsylvania Mardi Gras Gala. They received the Founders Award, representative of their volunteerism and advocacy for the Epilepsy Foundation. This award is accepted on behalf of my family and friends that have supported me in so many ways. Thank you! Here is the speech my daddy gave:
“Thank you Alli, thank you to the Epilepsy Foundation Eastern Pennsylvania for giving us the opportunity to share our story while serving you.
In June 2008 we were walking on the beach in Kitty Hawk North Carolina … carrying our 4 month old twin girls Kye and Taylor in their belly packs. We thought they were asleep. Then my wife noticed Kye’s leg slowly moving up and down. But she still looked like she was asleep.
When my wife could not wake her up… She turned to me and said she thought she was having a seizure. I was skeptical because I believed seizures were always a violent, Hollywood style convulsion, but I trusted my wife’s assessment. At the time Bethany was a surgical trauma nurse at Children’s Hospital of Philadelphia. It turns out she was right.
After extensive testing, diagnosed with a febrile seizure, and we were told it was unlikely to happen again. Then just a few months later Kye had that Hollywood style seizure. A big long violent seizure. This time our local paramedics couldn’t stop the seizure and she was medivac’d to CHOP. After her third seizure, we knew something was clearly wrong yet we remained reluctant to take neurology’s advice to start anti-seizure medications.
At the time, our biggest concern was that Kye wouldn’t be herself, that she would get too tired or look drugged. Looking back, this was just the beginning of our learning of just how uninformed we were.
In the following months, Kye had many more seizures and failed multiple medications. We were now in survival mode, Kye’s brother Caleb was born and we now had 3 kids under the age of 2, and no control over Kye’s seizures. Her seizures were extremely difficult to stop, each one requiring rescue medication and more than a dozen hospital trips by ambulance.
Every day we learned even more about how little we knew about epilepsy. Kye was diagnosed with Dravet Syndrome, a sever genetic form of epilepsy that is characterized as intractable epilepsy starting in infancy, developmental delays, behavioral issues, and a mortality rate of 20% by age 20. It was time to look for support to help us learn about epilepsy, and learn what resources were available to to Kye, to her caregivers, her educators, and to our family.
In order to support Kye, we have used the foundation’s resources in her education planning and provided training to teachers and nurses at Kye’s school. Foundation staff provided a worldwide webinar to my colleagues on basic epilepsy education and trained the paramedics at my employer in seizure response and first aid. The foundation also provided training to our local first responders and the pediatricians and nurses at our local hospital. We have integrated the Epilepsy Foundation into our everyday life. Thank you to all the wonder foundation staff that have worked with us.
As we continued to struggle with Kye’s medical needs, we started posting on a private website to keep our friends and family informed. The number of people following Kye’s story continued to grow and we continued to evolve our use of social media and direct community outreach into what Team Kye has become today. Through Team Kye, The Kyelynn Goering Foundation was formed to educate our local community and others about epilepsy.
We want Kye grow up in a community that knows what to do if she has a seizure and aren’t afraid of her or her epilepsy. We never want Kye to feel she needs to be ashamed of or hide her epilepsy. We want everyone with epilepsy to be loved accepted and supported by friends, family and there whole community.
A big step in acceptance is first being educated. We hope that by sharing Kye’s story and our family’s journey, others become educated and epilepsy becomes something that people aren’t afraid to talk about.
Fortunately Kye has not had a tonic clonic seizure requiring rescue in 4 years. Although we continue to deal with some smaller seizures and multiple developmental delays consistent with her Dravet Diagnosis, we now have the freedom to share some of the support that had been given to us.
But we can’t do this alone, and this is where you come in. The Epilepsy Foundation Eastern Pennsylvania relies on all of us to continue to support families like ours and kids like Kye. We ask that tonight as you enjoy this celebration you will show your support for Team Kye!”
Bradley J. Goering Copyright 2016