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.
Hebrews 11:1 describes faith as confidence in unseen promises. The author reflects on personal faith amid challenges, particularly as a special needs mom. True faith does not hinge on seeing immediate results but on trusting God’s nature and promises. Faith means trusting God regardless of outcomes, affirming His goodness and love.
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.