Day 2 of Sam's FIRES Diary. Sam is settled at PCCU at QMC. He has his own room as they are unsure if he is infectious. They are trying to find out why it has happened. They are doing a lumbar puncture to rule out meningitis and PIMS which is related to covid. We saw the consultant and they gave us lots of reassurance. They said there is a huge protocol of anti-seizure medication to give Sam, so try not to worry.

This is my first FIRES diary entry from 22 May 2021. It was the day our perfectly ordinary lives changed forever, when Sam, my five-year-old son, was suddenly struck down with FIRES (Febrile Infection Related Epilepsy Syndrome). FIRES is part of a wider condition called NORSE (New Onset Refractory Status Epilepticus). Both are rare and catastrophic neurological emergencies that strike previously healthy people without warning, although children and young adults are most commo

Adrian died in February 2026 from FIRES. He was just 8 years old, and a much loved son, brother, grandson, nephew and friend.

Sam’s Superheroes Foundation has officially partnered with the Epilepsy Research Institute to co-fund vital research into FIRES (Febrile Infection Related Epilepsy Syndrome)

Thanks to the RNLI, Sam’s name is engraved in the decals of the Shannon-class lifeboat, Duke of Edinburgh a moving tribute to loved ones whose legacies live on through lifesaving.

Mickleover FC feature Sam’s Superheroes’ logo on this season’s home game football kit shorts completely free of charge.

Rachel shares Sam’s story and highlights ways to stand alongside families affected by this rare epilepsy syndrome.

A massive superhero THANK YOU to the incredible Sam Capps, who quite literally took the plunge for Sam's Superheroes jumping out of a plane and raising a phenomenal £500 for Febrile Infection Related Epilepsy Syndrome medical research!

We’re over the moon to share that Sam’s Superheroes Foundation has been named “Charity of the Year” at the Lots for Tots Derbyshire Awards a first award for the Foundation and a beautiful tribute to Sam.

Joe died in 2024 from NORSE. He was just 29 years old, and a much loved son, brother, grandson, partner and friend.

A-Ling was just 4 years old when she developed FIRES in 2024. She survived, and now lives with significant neurological disabilities and ongoing care needs.

On Friday 20th September 2024, we set off on a challenge like no other — Sam’s Big Scoot to help reach our £50,000 target for UK FIRES research.

Sam died in 2021 from NORSE. He was just 28 years old, and a much loved husband, son, brother and father to three young children.