Omar’s Fight to Recovery with F.I.R.E.S. Syndrome

Our little Omar’s life changed on February 26, 2023. Only a few weeks after turning nine, we rushed Omar to Comer Children’s Hospital in response to a seizure he was experiencing. Now, 50+ days later, and still counting, he remains in the ICU fighting a rare condition called F.I.R.E.S. (Febrile Infection-Related Epilepsy Syndrome). Omar began experiencing multiple seizures daily, escalating to several seizures per hour while fighting a consistent fever. Omar’s care team at Comer Hospital tried to control his fevers in the hope it would stop the seizures. Unfortunately, FIRES has no exact treatment as no case is the same. A treatment or medicine that might have worked for one child might not work for Omar. There is no road map the doctors can use to treat Omar. There have been several medications and trials to get Omar better, but nothing has been able to make the symptoms all fully subside.

One of the hardest realities the family faced is learning from the doctors that Omar will not be the same sweet little boy he once was. Since just a few days after being admitted to the hospital, he has had to rely on a ventilator for support. He’s also been on a special ketogenic diet that has helped several cases with FIRES. Omar had surgeries on April 20th for a tracheotomy and a G-tube to allow him to continue his ketogenic diet. The tracheotomy was needed because Omar’s body hasn’t responded normally since being weaned off of sedation medication, and doctors want him to be able to breathe on his own. Unfortunately, at this time, the doctors don’t think his body could fully breathe on its own. The family’s current goals are to get Omar breathing independently without seizures and fevers. Once he is no longer intubated, Omar can begin the journey of rehab, and the doctor can get a bigger picture of the next steps to take for Omar. No child or family should go through this pain.

Before the first seizure, Omar was a healthy little boy. His mom has not left his bedside since the first day. She has been in the hospital every day, listening to the advice of his doctors, making tough decisions that she hopes will lead him closer to wellness, and praying and hoping for a miracle that Omar can safely come out of this. Although his mom won’t lose her job to care for Omar, she has not been receiving pay. Omar’s grandparents have stepped in to help Omar’s two siblings with their day-to-day tasks. We don’t know yet what Omar’s life will be like when he is out of the hospital and finally at home, but we do know that Omar’s road to recovery will be a long one. We know he will not be alone; his family and friends will be there every step of the way. Please consider donating to help offset the cost and sharing this initiative with friends and family to help Omar and his family during this tumultuous time.