David's Journey Fighting Febrile Infection Related Epilepsy Syndrome
World Rare Disease Day highlights David’s struggle with Febrile Infection Related Epilepsy Syndrome (FIRES), a condition causing uncontrolled seizures following a fever. FIRES presents high mortality rates (30%) and often results in serious brain damage for survivors. Despite these challenges, David continues to thrive, showcasing resilience in the face of adversity.
David’s VNS surgery was successful with no complications, and he is recovering well. His “medicinal rages” have become less frequent and intense. Progress is evident as he reduces phenobarbital, experiencing no seizures. David resumes normal activities, preparing for a move soon, and the family appreciates ongoing support through this journey.
After exhausting options to control David’s seizures and facing insurance hurdles with Epidiolex, the family is proceeding with Vagus Nerve Stimulation surgery. They hope for improved seizure management and quality of life. Despite challenges, they celebrate David’s progress over two years battling FIRES, expressing gratitude for support during this journey.
David Fighting F.I.R.E.S.