David's Journey Fighting Febrile Infection Related Epilepsy Syndrome
David’s post-surgery updates reveal significant improvements. The family has successfully weaned him off Briviact, resulting in fewer and less severe seizures. Cognitive and behavioral enhancements are noted, with reduced reliance on other medications. David shows progress in learning and behavior, and they anticipate further improvements post-relocation to Jacksonville.
The author reflects on their journey as a parent to David, who has a rare form of epilepsy. Despite facing numerous challenges and hospital visits, she emphasizes the importance of choosing joy amidst adversity. By creating joyful moments and celebrating David’s life, they find strength and hope in difficult times.
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 Fighting F.I.R.E.S.