October 3, 2023—the Day Our World Changed Forever, and Our Family Faced Our Biggest Challenge.
My son, Brandon, was 17 years old, a senior in high school, halfway through the football season. Senior year—an important and memorable chapter of life. Brandon was especially excited about football, a sport he loved and had played since the third grade. He was physically fit, strong, and ready to leave it all on the field. His commitment showed; he was having a great season until that fateful day, October 3, when he suffered his first-ever grand mal seizure while at school. We had no warning, no history of seizures.
In an instant, life as we knew it turned upside down.
Brandon was rushed to the ER, where he suffered a second grand mal seizure. He was intubated and quickly transferred to Rady Children’s Hospital. From the moment Rady’s CHET (Children’s Hospital Emergency Transport) team arrived, we knew Brandon was in good hands—our first encounter with the angels of Rady’s. He was admitted to the PICU, where our second family was born.
We were immediately surrounded by another team of Rady’s angels in the PICU, who jumped into action with determination, compassion, support, love, and the resolve to do everything in their power to save our son. Those first two weeks were an unimaginable, dark period filled with uncertainty about Brandon’s condition and survival, forcing us to rely heavily on our PICU team. Soon after, Brandon was diagnosed with FIRES (Febrile Infection-Related Epilepsy Syndrome)/NORSE (New-Onset Refractory Status Epilepticus)—a very rare and life-threatening autoimmune encephalitis causing uncontrollable seizures. The only way to stop his seizures was to place him in a medically induced coma, giving his brain time to rest and heal.
For nearly five weeks, we watched Brandon fight for his life, living in the PICU, surrounded by an incredible team of doctors and nurses—our second family—who fought tirelessly to save him. 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 is one of Rady’s biggest success stories among patients with FIRES/NORSE. The prognosis during the acute phase is dire, with mortality exceeding 30%. Even survivors face uncertain long-term physical and cognitive outcomes. Brandon truly is our miracle, thanks to the PICU team at Rady’s.
Thank you to the entire PICU team—the attending doctors, nurse practitioners, bedside nurses, respiratory technicians, and all the support staff who cared for Brandon around the clock. Special thanks to the Neurology Team, who rounded daily and worked tirelessly behind the scenes. We extend our deepest gratitude to Dr. Sandeep Khanna, Dr. Branden Engorn, and Dr. Raveen Raviendren, who led the PICU team in the fight to save Brandon’s life. You were our saviors, and without your care, we wouldn’t have Brandon home with us today.
When Brandon finally woke 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 spirit never wavered.
On his high school football team, Brandon wore jersey number 7. In an eerie twist of fate, he spent exactly 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, doing everything possible to save our son. They became our angels, our extended family, and for that, we are forever grateful.
Today, Brandon is doing well physically and cognitively, though he still suffers daily seizures. He survived, just like other PICU children whose pictures line the corridor of the PICU entrance. Walking this corridor daily, surrounded by these children and their incredible stories, strengthened my hope and faith in the PICU—a place where lives are saved, and miracles truly happen.
Watching Brandon’s progress has been nothing short of amazing. He continues to recover, and though the journey remains long, his strength and resilience inspire us every single day. As his mother, I will never have enough words to fully express my gratitude to Rady Children’s for giving me my son back.