Family & Patient Stories
Here you can read personal stories from families and patients affected by New Onset Refractory Status Epilepticus (NORSE) and its sub-type, Febrile Infection-Related Epilepsy Syndrome (FIRES). These first-hand accounts highlight the impact of these rare conditions and the strength of the people facing them.
David’s Story
In early January 2017, just weeks before his seventh birthday, David came down with what seemed like a typical cold.
Bek’s Story
Bek felt ill, she thought that she had caught a cold. She went to the doctor and took time off work to rest.
Sam’s Story
On Monday evening, 22 March 2021, at 8 pm, every parent’s worst nightmare came true. Our lives, as we knew them, were irreversibly changed when Sam had his first-ever seizure.
Share your own Story
Every experience with NORSE or FIRES is unique, and by sharing yours, you can help others feel seen, supported, and understood. If you’d like to tell your story, please send us the details and a few photos to go alongside it.
