Personal Stories for Epilepsy Awareness Month
November is epilepsy awareness month and most within our community (85%) have expereince with epilepsy. STXBP1 is the 5th most common diagnosis in patients referred for genetic testing for epilepsy. The STXBP1 Foundation is Leading the Charge for a Cure to epileptic encephalopathies and related neurodevelopmental disorders caused by changes in the STXBP1 gene. We are leading the charge to overcome seizures because we know how terrifying they can be for patients and loved ones.
To celebrate Epilepsy Awareness Month, this blog includes an excerpt from one of our parent board members describing his first experience with his daughter's seizures.
Holding your own child while she has a seizure feels like holding your own heart as it beats outside of your body. My daughter’s seizures started when she was just 6 weeks old. I'll never forget the first time I experienced one of her seizures. I was in our small brick ranch feeding her Similac Sensitive formula and dodging her reflux, when her whole body began to twitch rhythmically like a heartbeat. Her eyes fixated on our drywall ceiling, her arms jumping forward with the weight of her small body, her hands clinched into little fists.
As I watched my tiny baby seize, I remember feeling like one does when staring at a clock. Her tiny limbs tapping at the air like second hands. Each second slowing down to strip the cloak of movement and show its real self. When you stare at a clock and watch the second hand, the world around you blurs, your perception of time bends, and everything stops moving. That's how it felt: like I was suspended in time, and I didn't want to move forward. I didn't want to have to move to the next second. I wanted time to stop and let me sit there quietly breathing while my little girls lie still in my arms.
The STXBP1 Foundation would like to thank all of the patients, families, researchers and scientists, donors, and supporting community for epileptic encephalopathies and related neurodevelopmental disorders. We see all of you and we are here to help by creating awareness, accelerating research, providing tools, fostering activism, and improving lives in our communities. Join us in our mission to use science and love to find a cure!
Do you have a story about your experience with epilepsy that you would like to share? Please comment below!
