David's Journey Fighting Febrile Infection Related Epilepsy Syndrome
The post reflects on the emotional journey of living with David’s chronic condition, FIRES, while acknowledging the pain of the past. Despite ongoing challenges, the family celebrates David’s resilience, growth, and the support of loved ones. The author emphasizes gratitude for life, recognizing each moment as a gift, especially as David turns 11.
The author shares their family’s journey with epilepsy, focusing on their son David’s rare diagnosis of FIRES. After multiple medications and surgeries, including VNS surgery, they detail the ongoing challenges, managing seizures, and the emotional toll on the family. They emphasize the importance of awareness and understanding for better support.
In 2019, David experienced significant improvements in his health after switching to Depakote and undergoing VNS surgery. He celebrated milestones like his 9th birthday and transitioned to public school. Despite challenges, including severe seizures and medication withdrawals, the family remained optimistic and grateful for his progress, hoping for continued advancements in 2020.
David Fighting F.I.R.E.S.