Reggie is a gorgeous 3 year old boy from Harwich, near Cambridge, UK. He was struck down with the condition Febrile Infection Related Epilepsy Syndrome (FIRES) in the middle of 2021. He was treated at Addenbrooke's Hospital, Cambridge.

Read Reggie's devastating story as told by his parents, and published by the Harwich and Manningtree Standard.

Click here for Reggie's story, as published in the Harwich & Manningtree Standard

FIRES is defined as as a condition not a diagnosis. It is a new onset of refractory status epilepticus, without a clear or active structural, toxic or metabolic cause in a patient who does not have active epilepsy. Status epilepticus is a condition of prolonged seizure activity or repeated seizures without full recovery in between that does not respond to appropriate medication. (As defined in the National Organisation for Rare Disorders (NORD)).

To learn more about FIRES click here - FIRES

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