Many of you may recognize our son Braylon as the kid playing his trombone at the Illini Men's Basketball games, decked out in his jersey and cheering passionately for his beloved team. What you may not know is that Braylon has epilepsy.
Epilepsy is a disease involving recurrent unprovoked seizures. There is NO cure. There are many medications available, but they do not work for everybody and can have many adverse side effects. It can take YEARS for an individual to find the right combination of medications to control their epilepsy.
Since January 2017, Braylon has had four seizures lasting about 15 minutes each that we have witnessed. Each one resulting in a trip to the hospital by ambulance, as a seizure lasting more than 5 minutes is considered status epilepticus and a medical emergency.
Braylon's seizures typically occur while sleeping or waking from sleep, which means that he may have had seizures in his room at night that we have missed. This is terrifying to us as the fear of losing Braylon in his sleep is very real. Because of this, we check on him multiple times before we each go to bed at night. We check on him if it sounds too quiet in his room or if it sounds like he is moving around a lot. We check on him if he is snoring and then again if we wake up and no longer hear him on the monitor.
Currently, Braylon has been seizure free for about seven months. The road to get here included several EEGs, countless blood draws and IVs, iron infusions and several medication changes. Despite all of this, Braylon is an active, happy and compassionate little man. His resiliency and love of life has prompted our family to partner with the Epilepsy Foundation as Athletes vs Epilepsy Ambassadors. We are committed to raising funds to help find cures and overcome the challenges created by epilepsy.
Please make a donation in support of our efforts with Athletes vs Epilepsy. No donation is too big or too small and will help ensure that people with seizures have the opportunity to live their lives to their fullest potential.
Additionally, as part of Epilepsy Awareness month, there are two events taking place in Champaign. The Orange Krush is hosting a dodgeball tournament on Sunday, November 11 to benefit the Epilepsy Foundation. You can register your team of 8-10 people here. And the University of Illinois will be hosting an epilepsy awareness game on Sunday, November 25. You can purchase tickets here.
We hope to see you there!
We are very blessed and grateful to live in such a supportive community!
Our sincerest thanks,
Jamall and Rebekah Walker