Welcome to My Sharon's Ride.Run.Walk. San Diego Fundraising Page - in Honor of BRANDON BYRNES #7STRONG
Sharon's Ride.Run.Walk San Diego is a 15-mile Bike Ride or 5K Run/Walk Fundraising Event in support of the Epilepsy Community. We are walking for the first time in honor and support of our son, Brandon Byrnes, and his journey with Epilepsy. We also walk and fundraise to help The Epilepsy Foundation of San Diego County so they can provide wraparound support services and programs at no cost to individuals and families affected by epilepsy. The Epilepsy Foundation has been an amazing source of support for our family over the last year as we embarked on our journey with Epilepsy. We came into this space with no real understanding or knowledge of Epilepsy. The unknown is a scary place. We felt very alone as a family in our fight to help and support our son through this condition. The Epilepsy Foundation gave us that initial comfort, support, resources and information. Information is knowledge! And we share our story to spread awareness and knowledge to others who have been in this space or are just encountering their own journey with Epilepsy.
Epilepsy is more than seizures. Every story matters in this fight. Here is my personal story of WHY this matters...
October 3, 2023, the day our world changed forever and our family was faced with our biggest challenge.
My son, Brandon, was 17 years old, a Senior in High School and halfway through the football season. Senior year – a year and season of life that is supposed to be one of your best and most memorable. A year Brandon was very excited for, especially football. A sport he loved and played since the third grade. He was physically fit, strong and ready to leave it all on the field – and it showed; he was having a great season. Until that fateful day, 10/3/23, the day he suffered his first-ever grand mal seizure while at school. We had no warning, no history of seizures. In that moment, that instant, life as we knew it was turned upside down.
Brandon was rushed to the ER where he suffered his 2nd grand mal seizure. He was intubated and quickly transferred to Rady Children's Hospital. From the moment the Rady’s CHET (Children’s Hospital Emergency Transport) team entered the ER to transfer Brandon, we knew we were in good hands. Our first encounter with the angels of Rady’s. He was admitted to the PICU (Pediatric Intensive Care Unit) and from there our second family was born. We were surrounded by another team of Rady’s angels in the PICU who jumped right in with determination, compassion, support, love, and fight in their eyes to do everything in their power to save our son. The first two weeks we were living in an unimaginable, dark time, not knowing what was wrong with Brandon, whether he would survive this and relying heavily on our PICU team to figure it out.
Shortly thereafter, Brandon was diagnosed with a very rare and life-threatening condition called FIRES (Febrile Infection-Related Epilepsy Syndrome)/NORSE (New-Onset Refractory Status Epilepticus). FIRES/NORSE is a type of autoimmune encephalitis, a very rare and severe brain disorder, that causes uncontrollable seizures. The only way to stop his seizures was to place him in a medically induced coma to give his brain a chance to rest and heal. For almost five weeks, we watched Brandon fight for his life. We lived in the PICU, surrounded by the most incredible team of doctors and nurses, our second family, who fought for and with us to save Brandon’s life. And by the grace of God, and the PICU family He surrounded us with, Brandon’s life was saved and he is still with us
today!
Brandon has been one of Rady’s biggest success stories among patients with FIRES/NORSE. The prognosis during the acute phase is dire, mortality is high (30%+) and if you do survive the acute PICU phase, long term physical and cognitive ability is unknown. Brandon truly is our miracle thanks to the PICU team at Rady’s.
When Brandon finally woke up from his coma, we faced another unimaginable challenge—he had to relearn everything. He spent seven weeks in the Rehab Unit, working tirelessly to regain the ability to move, sit up, stand, walk, talk, and even swallow. It was heartbreaking to see our once unstoppable son struggle with the simplest tasks, but his determination and fight never wavered.
On the High School football team, Brandon wore the number 7 jersey, and in an eerie twist of fate, he spent 77 days at Rady Children's. Those 77 days were the hardest of our lives, but they were also filled with moments of hope, faith, love, and unwavering
support. The PICU team didn't just care for Brandon; they fought alongside us, pushing to do everything possible to save our son. They became our angels, our extended family, and for that, we are forever grateful.
Brandon is doing well physically and cognitively. He still suffers from daily seizures. But he survived, just like the other PICU kids who had been there before us and whose pictures line the corridor of the PICU entrance. Walking this corridor daily surrounded by these children and their survival, strengthened my hope and faith in the PICU; a place where lives are saved and miracles do happen.
Watching Brandon’s progress has been nothing short of amazing. He continues to recover, and though the journey is long, his strength and resilience inspire us every single day. Keep fighting the good fight, Brandon! We love you! #BSTRONG7
This is WHY we walk, WHY we fundraise, WHY we support the Epilepsy Community and the Epilepsy Foundation of San Diego. Please help us support this cause that is very near and dear to our family, spread awareness and make a difference for the people we love who live with epilepsy.
DID YOU KNOW?
- 1 in 10 people will have a seizure in their lifetime.
- 1 in 26 people will be diagnosed with epilepsy.
- 3.4 million people nationwide are affected by epilepsy.
- 50,000 San Diegans are living with epilepsy.
- Epilepsy is the fourth most common neurological disorder and affects people of all ages.
- Epilepsy means the same thing as "seizure disorders."
- Epilepsy is characterized by unpredictable seizures and can cause other health problems.
- Epilepsy is a spectrum condition with a wide range of seizure types and control varying from person-to-person.
- Public misunderstandings of epilepsy cause challenges that are often worse than the seizures.
