This is my first diary entry from 22 March 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 commonly

I never imagined that when Sam was born so healthy and perfect, that just over five years later I would be arranging his funeral. Five years ago today — 10 June 2021 — Sam’s family, friends and teachers gathered together to say goodbye to the most beautiful little boy. Sam's Church Service The night before Sam's funeral, I decorated the church with his paintings, drawings, dressing up clothes, scooter, bike and all the things that were just Sam. I just needed the church to be

We are absolutely delighted to announce our first £110,000 NORSE and FIRES epilepsy research collaboration with the Epilepsy Research Institute has now been formally approved and included within the Institute’s national research portfolio for 2026/27. It will be starting towards the end of this year.

Families Driven By Love: Three UK NORSE & FIRES Families United by Loss and a Determination to Create Change attend the Epilepsy Research Institutes Supporters Reception where they announced their 11 new research investments for 2026/27

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

rue, unconditional love isn’t only about fighting - sometimes it’s about recognising when the fight can’t be won. It’s about releasing your child from their suffering, no matter what pain that choice brings to you. That, I believe, is love in its purest form.

The outcome of his neurological exam was catastrophic. He showed no responses in his arms or legs and had no gag reflex - something necessary for independent breathing. Without a gag reflex, there’s a risk of choking. Sam’s pupils were constantly dilated and unresponsive to light. They had been like this shortly after his admission, around the time of his brain swelling.

We have also been told the question is whether Sam can have any quality of consciousness between his seizures, as his brain patterns are not normal. But we won’t know unless we try to wake him. Can you imagine your child facing such an unknown?

Daisy, Sam’s dog, made her first visit to see him yesterday. She has been officially named Treatment 18. We had to go through checks to make this happen so it could all be properly authorised. All I can say was she blew all of us away including Sam’s doctors and nurses. She was the true definition of AWESOME, a true superhero, just like her brother Sam.

I am finding it difficult to cope - I am a mess. I need to be strong, but sometimes I just can’t, and yesterday was one of those days. I love my son so god dam much, and the pain at seeing him in this horrific condition is just too much to bear sometimes – it is like my heart is being continually stabbed – and I can barely breath.

NORSE and FIRES were raised in UK Parliament for the first time when Samantha Niblett MP spoke in the House of Commons on behalf of Sam's Superheroes Foundation and families affected by these devastating neurological conditions.

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.

We have just had a long chat to one of Sam’s consultants about his MRI results from yesterday. His medical team are busy making a plan for him. The priority is we need to somehow get control over his seizures urgently, and there are a number of other interventions for them to try. The urgency is increasing due to the damage being done to Sam’s brain and they are now considering interventions which they wouldn’t have done previously.

Sam had to be moved between four different ventilators - from critical care, to a mobile one, to the MRI waiting room, and then onto the MRI ventilator. I couldn’t watch when they switched them over. I felt physically sick.

The main ward is much noisier than the isolation room, so Sam is now wearing earplugs. We think noise and touch may be triggering his seizures. Last night, the nurse also placed ear defenders on him as well. The nursing team are just so caring. I cannot fault the level of attention they are giving him - it brings me a small sense of comfort to feel he is in such caring and safe hands. Sam is positioned slightly upright in bed, with a teddy tucked under each arm.

Day 6 - I can’t believe we have been here five days already, although it feels like we have been here for weeks. This time last week we thought Sam just had a routine virus. In the space of a week he is now fighting for his life in an induced coma. Not only are the medical teams struggling to understand what has happened - more importantly they are struggling to stop it. And I am struggling to cope with all of this. Sam’s lovely night shift nurse clearly worked non-stop.

Day 5 - I am struggling this afternoon. We have spoken to Sam’s neurologist and he has said Sam is not where they need him to be. The medical team reduced his medications overnight, but his seizures increased, and his seizure activity is still a big problem. Sam is now past the stage where they try to stop the seizures as quickly as possible, which is what they would normally do. They are now going to try longer-term medications.

Day 3 and 4 of a mother's FIRES Diary. I managed to somehow sleep last night it was our first night staying overnight in hospital. Me and Sam's dad are literally 30 seconds from critical care, and are so grateful for the room.

Day 2 of a mother'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.

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