Rachel and Sam

“Sam was an utterly dream little boy and I feel incredibly blessed to have been chosen as his mummy” – the words of Rachel as she remembers her son who passed away a year ago, aged just five.

Sam was a healthy child, with no history of seizures, when he developed Febrile Infection Related Epilepsy Syndrome (FIRES) – believed to have been an exceptionally rare reaction to a common virus. This syndrome caused Sam to have continuous and severe seizures and within 24 hours, he was placed in an induced coma. He sadly passed away at QMC Nottingham, just seven weeks later, on 8th May 2021.

Rachel said: “FIRES is a sub-category of New Onset Refractory Status Epilepticus (NORSE). This syndrome is exceptionally rare, and heart-breakingly Sam had a one in a million chance of developing it. It is also extremely challenging to treat, there are no standard treatment protocols as it is so rare. We were therefore relying on the experience and knowledge of Sam's amazing neurology and critical care consultants. The underlying cause of these seizures was also yet to be identified, as it didn’t appear to be an infection such as meningitis, thus making it even more challenging to treat. It wasn't genetic as the tests we had done were all negative. It was basically like fighting someone blindfolded.

She continued: “Sam was a much-loved little five-year-old superhero. He loved the great outdoors, cycling for miles with his daddy, going on long walks with his beloved dog Daisy, finding sticks so he could turn them into anything that captured his imagination and finding the best puddles to jump in. He was kind, gentle and loving and shy until you got to know him. He loved to make people laugh and he had a real thirst for learning – he was so articulate, even from a young age. Talking to Sam was like talking to someone five years older – he was so wise for his years.

“When Sam took his last breath, our world and life that we knew so well catastrophically shattered into a million pieces all around us. We then entered yet another new world of overwhelming grief, emptiness, numbness, desperation, and heart wrenching pain with the realisation that we would never again see our beautiful son, or hear his joyful voice his laugh and his giggles, or hear him call the words mummy and daddy, or feel his loving kisses and hugs, or see him write a card with I love you in, just because…well, just because my precious boy felt like doing it.”

To find out more information about NORSE and FIRES, visit: NORSE INSTITUTE

Rachel and Sam
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