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Life with epilepsy: Sam’s story – a FIRES Superhero

Sam

Rachel lost her son Sam to FIRES, or Febrile Infection Related Epilepsy Syndrome, in May 2021. FIRES is a rare and catastrophic syndrome where seizures present suddenly following a febrile infection or virus. The seizures can be relentless and difficult-to-treat – sometimes occurring over a hundred times a day. This National Epilepsy Week, Rachel is sharing Sam’s story – the story of a FIRES Superhero.

Sam was a beautiful, kind, loving, caring and joyful little boy who loved nothing better than cuddling up to his dog Daisy and exploring the great outdoors. He could be shy with people he didn’t know, had wisdom beyond his years, was very articulate, and loved superheroes and making me laugh. Sam had no underlying health conditions, was super fit and rarely poorly.

Just a few weeks after Sam’s 5th birthday, we were suddenly catapulted head-first into the fight of all fights to save his life from the sudden onset of FIRES. Although we didn’t know it at the time, the weekend of the 19th March 2021 would mark the beginning of the end to our perfect, yet ordinary family life.

Sam had what we thought was a normal childhood virus, although it was somewhat unusual with a difficult to control temperature and a strange red rash on his cheeks. We sought medical advice and thought he was getting better, but his high temperature suddenly returned. Just minutes after arriving home from the doctors, Sam had his first ever seizure and proceeded to seize without regaining consciousness for 35 minutes.

He was immediately taken to hospital where he went on to have further seizures. Within eight hours he went into respiratory arrest and was placed into an induced coma. Sam was quickly transferred to the critical care unit at Queen’s Medical Centre, a neurology centre in Nottingham, where he finally received the expert care he so badly needed. There, our neurology team informed us that Sam was presenting with FIRES. Sam was critically ill, and it was highly likely he wouldn’t come out of this neurologically unscathed. Indeed, after just seven days, the results of Sam’s first MRI showed he had brain swelling and evidence of brain injury, as a result of his continuous seizure activity.

It was clear Sam’s seizures had to be stopped, but there was a massive problem. As his neurology team explained, we don’t know what causes FIRES – what switches it on, and therefore we don’t know how to switch it off. It was like fighting someone blindfolded.

FIRES threw us head-first into a world that we had never encountered before; one of critical care and epilepsy. We were witnessing things no parent should ever have to see and hear and were watching on helplessly as our child continually seized and was kept alive by machines. Every single day was a roller coaster as treatment after treatment didn’t work. Alongside his awesome medical team, Sam was fighting for his life day in and day out.

Trying to stop Sam’s seizures whilst keeping him alive was hugely complex. He was given multiple medications, and innovative treatments but had many complications. After seven weeks in critical care – despite all these medications and treatments, despite the world leading care and despite the non-stop fighting by my son and everyone involved – we couldn’t stop his seizures. It was acutely distressing, not only for us his family, but for all those involved in his care.

After his final MRI, Sam’s medical team said the heart-stopping words no parent should ever have to hear. Sam had catastrophic, irreversible brain damage and they felt it was in his best interests for his life support to be withdrawn. The damage the seizures had done to his brain was just too great and meant that Sam would never have any meaningful recovery.

In the space of seven weeks our entire world had imploded and was destroyed by a syndrome we had never heard of before. As parents who loved our son so very much, we had a responsibility. We could not allow him to suffer any more than he was, and wanting to do what was right for Sam we supported his team’s decision, despite our feelings of utter heartbreak.

When Sam died, I created Sam’s Superheroes Foundation. It’s a legacy for Sam to ensure that the impact of his short life remains in the world for years to come. Sam is firmly at the heart of it. We fund animal assisted therapy, fund and support FIRES research and we support families whose lives are impacted by FIRES. And I am also proud to say that Sam’s dog Daisy plays a leading role in it. She spreads his love in the world by carrying out life-changing Therapy Dog work to young people in our local community.

I hope Sam’s story has shown why research into this catastrophic and cruel syndrome is so badly needed. The impacts of FIRES are far reaching and simply devasting. I hope the FIRES research being funded by the Epilepsy Research Institute will increase understanding on the causes of FIRES, and will discover effective treatments that will stop FIRES and prevent it from devasting so many children’s lives.

I, along with Sam’s family and friends and all the FIRES families around the world, would like to extend a huge thank you to all those involved in researching this devasting condition. Thank you for giving us much needed hope, you are all superheroes in my eyes. Whilst we could not save Sam, we can finally start to provide hope for other children and families.

Learn more about the FIRES and the research we’re funding for the syndrome here.

Learn more about the important work of Sam’s Superhero Foundation here.

This National Epilepsy Week, please consider making a donation to the Epilepsy Research Institute so that we can continue supporting crucial research and providing hope for people affected by epilepsy. Thank you.