David's Journey Fighting Febrile Infection Related Epilepsy Syndrome
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.
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.