SAM'S STORY
To the world a little boy, to us the world
Samuel Liew (8th March 2016 – 8th May 2021)
For five precious years, our beautiful Sam graced this world with his presence, leaving us with treasured memories that will live forever in our hearts. Sam was extraordinary - kind, gentle, and beautiful both inside and out. Even as a toddler, he showed wisdom beyond his years.
Sam approached life with boundless curiosity and joy. His love for nature, animals, and outdoor adventures was infectious. He found magic in the simplest things - transforming ordinary sticks with his imagination, marvelling at snails with his Nana, or splashing in puddles wearing his beloved wellies. At the beach, regardless of weather, he'd dig in the sand and collect stones, finding wonder in every moment.
His bond with Daisy, our black Labrador, was extraordinary - they were inseparable companions who started each day with family cuddles on mummy's bed. Sam was always active, mastering his bike at just four and joining his daddy for swimming, walking, and camping adventures. His musical spirit shone through as he played guitar, drums, and piano, often creating original songs with his mummy.
Like many children, Sam adored superheroes. Little did we know he would become one himself, inspiring our charity's name: Sam's Superheroes. Above all, Sam's defining quality was his kindness. His gentle, caring nature touched everyone he met.
Disclaimer: The following story is written by Sam’s mummy, sharing their personal experience with FIRES, including Sam’s final days. It is an honest and heartfelt account that some readers may find distressing. If you currently have a child experiencing FIRES, please only continue reading if you feel emotionally ready to do so.
The Day Our Lives Changed Forever
On Monday evening, 22 March 2021, at 8 pm, every parent’s worst nightmare came true. Our lives, as we knew them, were irreversibly changed when Sam had his first-ever seizure. And the nightmare that unfolded was far worse than anything I could have ever imagined—far worse than anything I’d even considered could happen to us.
The weekend of 20 March had been troubling. Sam had a high fever, was feeling a bit sick, and seemed more tired than usual. We reached out to various out-of-hours services and were reassured that it was likely just a virus. On the morning of Monday, 22 March, I called our GP. Again, we were told it was probably a virus and that I should continue giving Sam Calpol and Ibuprofen.
By Monday afternoon, although Sam seemed better—he’d been playing at his grandma’s—I couldn’t shake the feeling that something wasn’t right. His fever was still high, and my mother’s instinct told me I needed to take action. I drove him to Derby Walk-in Centre. Sam had an examination, but they couldn’t find anything of concern, and once again, it was suggested he had a virus. However, they did prescribe penicillin as a precaution, given his red throat and history of tonsillitis.
After stopping at the late-night chemist to pick up the prescription, we finally got home around 7:45 pm. I gave Sam his first dose of penicillin and then asked if he’d like a drink of water. He said, "No, mummy," which struck me as odd, especially after taking medicine. Those were the very last words I would ever hear my son speak.
As Sam sat at the kitchen table, I noticed him drooling and blowing bubbles. He wasn’t responding to me when I asked if something was wrong. I called his dad, who had just left, and asked him to take us to A&E. My panic escalated in that moment—I knew something was terribly wrong. Just as I hung up, Sam collapsed unconscious into my arms.
I called 999 as I scooped him up and rushed to my neighbour’s house, all the while screaming for help. The panic I felt in that moment cannot be put into words. At my neighbour’s, we laid Sam on their sofa. He remained unconscious, having seizures for over 30 minutes.
East Midlands Ambulance (EMA) arrived within about 10 minutes. By 8:35 pm, Sam’s seizures finally stopped, and he was transferred to the ambulance. The paramedics blue-lighted us to the hospital, giving a pre-alert to expect our arrival. In the ambulance, I knew deep down that something was horribly wrong. It was a feeling I couldn’t shake—mother’s intuition.
Sam was sitting up in the ambulance with his eyes open, but he wasn’t talking, wasn’t crying, and wasn’t reaching for me. He should have been terrified, but he wasn’t making a sound. I now believe he couldn’t speak, and that’s when I realized something catastrophic had happened.
Derby Royal A&E
We were rushed straight to Derby Children’s A&E, where my mind was fixated on getting Sam antibiotics. I was convinced that he had some sort of infection, though I had no idea what was happening. As we arrived, Sam had two more seizures—each one more terrifying and painful to watch than the last. My heart was in my throat, and I couldn’t tear my eyes away from him.
During the seizures, Sam’s airway became severely compromised, and his oxygen levels dropped dangerously low. After the first seizure, he regained consciousness—his eyes were open, but he still wasn’t talking or reacting to anything around him. I held on to the hope that he would come back to us, but after the second seizure, Sam didn’t wake up. Instead, he seemed to drift into a deep, unnatural sleep.
I was told that this was common after a seizure, but something in my gut told me that it wasn’t just that. My fear and panic reached new heights as I watched my little boy, the one who had been so full of life just hours earlier, lying there unresponsive.
While we were at A&E, Sam had a head scan. The results came back with nothing significant, and I was left with more questions than answers. The fear I felt in that moment is something I can’t adequately explain. It was a terror so raw and all-consuming that it shook me to my core. All I could do was hold onto Sam and hope against hope that he would be okay.
Derby HDU
In the early hours of the morning, Sam was admitted to the High Dependency Unit (HDU), and I stayed by his side. As the night wore on, things took a turn for the worse. Sam continued having seizures, and his struggle to maintain his airway became more pronounced. I could see the medical team was starting to panic. The nurses and doctors were doing everything they could in a terrifying situation, and yet, I could only stand there, feeling utterly powerless and beside myself with fear.
It was clear that something catastrophic was happening to Sam. I wasn't fully aware at the time, but I’ve since learned that around 2:45 a.m., Sam went into respiratory arrest—a side effect of the medication they had given him. In that moment, the medical team worked frantically, and more and more professionals began arriving to assist him. I could see Sam surrounded by a large team, and I had no idea what was going on. All I could do was cling to the hope that they would save him.
I now know that they were preparing to place Sam into an induced coma and intubate him to help maintain his airway. But in those moments, I was terrified, grasping for any understanding of what was happening to my son.
Once Sam was in the induced coma, the medical team at Derby reached out to the CoMET (Children's Medical Emergency Transport Team) to arrange for him to be transferred to the Paediatric Critical Care Unit (PCCU) at Queen’s Medical Centre (QMC) in Nottingham. This was a specialist neurology centre about 20 miles away. When a child requires intubation, they must be moved to a hospital with the right expertise and equipment.
We didn’t know it then, but the team at QMC would become a huge part of Sam’s care over the next seven weeks. We are forever grateful to them.
Meeting the Super-Hero CoMET Team
The CoMET Team arrived around 5 a.m. that morning. When they walked into the HDU, they brought a calmness and professionalism that instantly reassured me. I knew right away that Sam would be in safe hands—they were like real-life superheroes. It took them about five hours to stabilise Sam and prepare him for transfer.
When Sam was finally ready, seeing him surrounded by drips and machines to keep him alive was like an out-of-body experience. His transport trolley was a mobile intensive care unit. Sam's dad and I walked beside him as the transport team made their way to the waiting ambulance. We weren’t allowed to travel with him, as there wasn’t enough room for us. We were told not to follow the ambulance. The thought of my child being blue-lighted to another hospital without me was unbearable.
In shock and overwhelmed, we rushed home to pack overnight bags and head to Queen’s Medical Centre in Nottingham. Little did we know, heartbreaking and devastating times lay ahead for Sam.
Entering the New World of PCCU
We entered the unfamiliar world of PCCU around midday, terrified and in shock, with no idea what lay ahead. Sam was placed in isolation as it was unclear if COVID-19 was involved, especially since he and I had tested positive just before Christmas 2020.
We were incredibly fortunate to be given a parent’s room, just 30 seconds from Sam’s ward, a small mercy for which we will always be grateful.
What Was Wrong with Sam?
In our initial conversation with the PCCU consultant team, we felt hopeful. They believed the seizures could be controlled, likely caused by a virus or infection. Apparently, there was a huge protocol of anti-seizure medication that could be given to Sam, and we felt optimistic.
He was in the best possible place, receiving antibiotics and antiviral meds to address any underlying causes.
Whirlwind of Activity
The first few days were a whirlwind of activity around Sam. A constant team of medical professionals worked tirelessly, preparing new IV bolus medications. Each treatment would initially seem effective, only for his brain to find a way around it, triggering seizures once again. It was utterly devastating and heartbreaking.
I was terrified, an emotional wreck, and in pieces. Alarms continuously blared—warning of changes in his vital signs like blood pressure, heart rate, or breathing, or signalling that medications needed adjustment. Sam’s tiny body was receiving an overwhelming number of medications, and I was gripped by a fear unlike anything I had ever known, terrified I was going to lose my son.
A CFAM (Cerebral Function Analysis Monitor) device was attached to his head to monitor brain activity, alongside continuous visual recording to detect clinical seizures.
The medical team worked their way down the anti-seizure medication protocol. The deeper they went, the more toxic the treatments became. Sam had now entered Super-Refractory Status Epilepticus territory. Refractory status epilepticus occurs when seizures persist despite two anti-seizure medications. Super-Refractory Status Epilepticus is a life-threatening condition where seizures persist for more than 24 hours, even after anaesthetic treatment, or recur upon weaning from anaesthetic. Seizures lasting longer than 30 minutes can cause brain damage or worse.
Sam's seizures HAD to be stopped.
Stopping the Seizures... the Impossible Task
As the reality set in that stopping Sam's seizures was far from straightforward, I was overwhelmed with panic and fear.
The first few days in PCCU were a blur, filled with anxiety and emotional turmoil. I leaned heavily on Sam’s dad to communicate with the medical teams while I struggled to stay grounded. I reminded myself that Sam was in the best place possible, and I had to trust the experts. Googling, second-guessing, or trying to micro-manage a condition I knew nothing about would only drive me crazy and potentially harm Sam’s care.
But soon, it became apparent that my passive support was not enough. Sam needed me to fight alongside him, not just as his mother but as an active member of his care team. There was no room for bystanders. He needed someone to advocate fiercely, someone who would not accept defeat. And so, I stepped up, determined to work with the medical team, be his voice, and fight for every possible solution.
One in a Million Chance
We were soon informed by Sam’s Neurology team that he was presenting with an exceptionally rare condition known as NORSE - New Onset Refractory Status Epilepticus, and something called FIRES - Febrile Infection Related Epilepsy Syndrome.
They handed us a printout from the National Organization for Rare Disorders, explaining that FIRES is a subcategory of NORSE Rather than a diagnosis, it describes the symptoms being presented. Hearing that your child has a rare disorder is every parent’s nightmare.
This syndrome was heartbreakingly rare, with Sam having a one in a million chance of developing it. It was also incredibly difficult to treat, with no standard protocols due to its rarity. We were entirely reliant on the expertise and knowledge of Sam’s exceptional neurology and critical care consultants.
The underlying cause of Sam's seizures remained unidentified, as it didn’t appear to stem from an infection like meningitis. It wasn’t genetic either, as all tests came back negative. Treating Sam was like fighting an invisible enemy, and we were navigating it blindfolded.
Sam: A Real-Life Superhero
Sam was placed on a powerful mix of medications, including several anaesthetic drugs typically reserved for critical care settings due to their extreme toxicity and short-term usage guidelines.
Remarkably, Sam endured these medications for weeks—doses that would have been fatal for an adult. His youth, fitness, health, and strong heart played a significant role in his survival. Sam is truly a real-life superhero, and saying I am proud of him feels like an understatement.
The anaesthetic drugs aimed to suppress Sam’s brain activity to achieve "burst suppression" for 48 hours, halting almost all brain activity except for brief bursts every four seconds. This approach was intended to give his brain the necessary rest to reset, much like rebooting a malfunctioning computer.
In addition to this, Sam received innovative therapeutic treatments targeting his immune system, suspected to be the cause of his seizures—his immune system attacking itself. Some of these treatments had never been used in Nottingham PCCU for such symptoms before, underscoring the unprecedented nature of Sam’s case.
Other Complications
During the seven weeks Sam was in the hospital, he faced numerous complications and challenges, including brain swelling, cerebral salt wasting with elevated urine sodium, severe constipation leading to significant stomach aspirates and non-absorption of food through enteral tube feeding, high triglyceride levels, unstable body temperature, infections, pneumonia, fluctuating blood pressure, and an unstable heart rate. These were just a few of the hurdles Sam had to overcome.
Sam's medical team was exceptional, providing world-class care and collaborating with us as parents. They consulted with other medical centres and experts globally, fostering a first-class, ego-free teamwork environment.
My sister-in-law Amy, based in Denver, also contributed by researching potential treatments, ultimately discovering articles on Anakinra, a treatment we decided to try.
Stressful MRI Scan Days
Sam underwent four MRI scans during his hospital stay, and those days were always incredibly stressful. Watching him being transported along with all the equipment that kept him alive was overwhelming. Waiting for the results added to the tension. The brain, being the most complex and least understood organ, made predicting outcomes difficult.
A poor MRI scan didn't necessarily mean a poor outcome, and vice versa. There were cases where patients with concerning MRI results experienced minimal impact, while others with seemingly better scans had worse outcomes.
The only certainty was the uncertainty.
Best Care Scenario - Significant Disabilities
Sam's first MRI scan was delayed by a week due to his instability, and when we received the results, it was devastating. The best-case scenario was that Sam would face significant disabilities. The scan showed damage to his brain from the seizures, including several lesions. The second MRI revealed brain swelling, which aligned with his non-reacting pupils.
Through tears, we told the team that we didn’t care about the disabilities Sam might have. We were determined to give him the best life possible, with a full-time mummy dedicated to his care and ensuring he had the best quality of life, regardless of any disability. We needed the team to focus on keeping him alive.
As weeks passed, each MRI showed the progression of the lesions, where brain tissue had died. Eventually, these areas would fill with fluid, leaving behind catastrophic “holes” in his brain.
Daisy
We were incredibly fortunate to have an exceptional team of consultants caring for Sam. They were professional, calm, compassionate, innovative and dedicated. About four weeks in, Sam's wonderful consultant arranged for Daisy, Sam's dog, to visit. She was named "Treatment 18," and her consultant recognized the healing power of animal therapy.
There was a chance that Daisy could help Sam recover, and we eagerly took it. He also understood that Daisy would offer emotional support to both me and Sam’s dad.
Daisy was phenomenal. She entered the hospital with the confidence of a superhero on a mission, determined to get to Sam. Despite the strange sights, sounds, and smells of PCCU, she wasn’t fazed. With a room full of doctors and nurses, Daisy hopped onto a chair, and with some help, we moved Sam's hand so he could stroke her. She then settled onto his bed, making sure to lie on a rug to protect the expensive mattress.
Little did we know, this was just the beginning of Daisy’s journey as a therapy dog.
Reaching Out
We asked our Nottingham team to reach out to other neurology and PCCU consultants across the UK, and they unquestioningly did. Not that we were questioning their treatment of Sam, but in my mind the more manpower we had working on this, the better chance of success. They may have come across a treatment that we hadn’t heard of.
From this we tried a number of innovative treatments including super high levels of phenobarbital, using isoflurane gas (used in theatre environment during operations) to achieve burst suppression, and cannabidiol, a compound from the cannabis plant known for its potential to reduce seizures.
Despair... Nothing was Working
The medical teams had reached a point, around six weeks into his treatment, where they needed to reduce Sam’s critical care drugs, as he could not remain on them indefinitely.
The new strategy was that we weren’t going to be able to stop his seizures, and we needed to see if Sam could sustain his life and have any quality of life while having them. So, whilst his anaesthetic drugs were stopped, he would continue receiving all his anti-seizure drugs, and we were just going to treat the clinical seizures, i.e., the ones we could see.
Sam was taken off his Isoflurane gas, which had been sedating him and holding off the worst of his seizures. I was told by Sam's neurologist to be brave, as it would most likely be heart-breaking watching his seizures return.
They were right—it was the worst thing in the world, watching my darling, sweet, gorgeous boy have his seizures return with a vengeance. His near-constant seizing, drooling, and twitching. It was pure hell and torture to watch, and it simply broke me.
We had to document and time his seizures, but this was proving impossible, as they were coming thick and fast, one after another. I asked my mum to buy lots of baby muslins so I could put them around his face to try and catch as much drooling as I could, so it wouldn’t hurt the skin on his face; there was only so much suction he could take.
I did my best to comfort him, to keep doing what I could to care for him—reading his books to him, helping bathe him, change his nappy, cover him in his body lotion that we loved to try and prevent bed sores and keep his circulation going, monitor him, and in effect be an early alert for nurses to any changes in his condition or bodily functions.
I was with him from morning to night, and felt I knew what the 'norm' observations were for him, without even looking at his 24-hour observation sheet.
The Final Few Days
As Sam’s condition continued to deteriorate, the medical team began to make difficult decisions regarding his care. After weeks of intensive treatments, it became clear that we were reaching a turning point, and the next few days would be critical in determining the course of his journey.
First, Sam’s cooling therapy blanket, which had been helping regulate his body temperature, was removed. The hope was that he might be able to maintain his own temperature, but it quickly became apparent that he could not, as his body temperature began to fluctuate once again.
Unfortunately, Sam’s neurological exam soon revealed devastating results.
He showed no responses in his arms or legs, and worse, he lacked a gag reflex, a critical sign for sustaining breathing. Without it, he risked choking, which added to the gravity of the situation. His pupils, too, were constantly dilated and unresponsive to light—a condition that had begun after the initial brain swelling.
Sam’s final MRI scan took place on Wednesday, 5th May. When the results came in, they shattered what little hope remained. The brain damage had spread significantly, affecting both the centre and outer parts of his brain. The extent of the damage was likened to rapid-onset dementia. Coupled with the results of the neurological exam, it was clear there would be no recovery. The damage was catastrophic and irreversible, and it felt as though Sam’s brain was being eaten away, with no end in sight.
The emotional toll was unbearable. Watching my sweet boy, so brave despite everything, enduring unimaginable suffering at just five years old was more than any mother should ever have to endure.
After careful consideration and discussion, the medical team determined that Sam’s breathing tube should be removed. The idea was that Sam would make the decision for himself—whether he could continue to fight or whether it was time to let go.
As his parents, we made the heart-wrenching decision to support this.
As a mother, the thought of Sam living in a state where he had no quality of life, where he could not even breathe on his own, was something I could not bear. We all agreed there were no further treatments left to try, and it was time to let him make his choice.
Sam’s Final Day
That Friday night, I stayed by Sam’s side, watching in agony as his seizures continued relentlessly, despite the medication he was receiving.
His body seemed to be losing its fight; his heart rate, blood pressure, and oxygen levels were all fluctuating wildly. Sam’s brilliant nurse and registrar worked tirelessly to keep him as comfortable as possible. The hours felt endless.
As the night wore on, Sam’s condition worsened. His oxygen levels were dropping more frequently, requiring constant suctioning and his heart rhythm had become erratic. Despite everything, I remained strangely calm. It may sound surreal, but I wasn’t overcome with hysteria. I had passed beyond the point of crying. My mind seemed to go numb, perhaps to protect me, as if it knew I needed to remain composed for Sam.
My sole focus was making Sam as comfortable as possible and sitting with him, so he knew he was not alone in his final hours. I had brought Sam into this world, and I was determined to stay with him, supporting him, as he prepared to leave it.
When morning came, Sam was given additional medications to try to reduce his seizures and make him as comfortable as possible. We took handprints, knowing that we might not have much time left to do so.
The hours that followed felt like they stood still. We knew we were preparing ourselves and Sam for the inevitable—removing his breathing tube. At 1 p.m., it was taken out, and for 90 minutes, Sam fought to breathe on his own. But his brain, while capable of triggering a breath, could no longer control the muscles needed to sustain life. His oxygen levels dropped to dangerously low levels—40%. Breathing is much more complex than simply inhaling and exhaling, and Sam’s body could no longer manage it.
In those final moments, I sang Sam our special family song and I recited his beloved prayer, the one he knew by heart. I told him how much he was loved, over and over again, by so many people. I promised him that we had made sure everything was ready for him. We told Sam it was okay for him to go—to be with baby Jesus, if that was his choice, and not to be afraid. He would be greeted by those who loved him dearly.
And so, at 1:30 p.m. on 8th May 2021, Sam, our beautiful boy, passed away in my arms and his daddy’s. He was just 5 years and 2 months old.
The moment Sam took his last breath, our world shattered. Life, as we knew it, was gone in an instant. We were thrust into a new reality of overwhelming grief, pain, and an aching emptiness. The realisation that we would never again hear Sam’s joyful laughter, his sweet voice calling us “mummy” and “daddy,” or feel his warm hugs and kisses—it was a loss beyond words. We would never again find a little handwritten note from Sam simply saying, “I love you.”
All of that was gone, and we were left with an unbearable silence.
To the world a little boy, to us the world. Briefly in our lives, forever in our hearts.
SAM'S LEGACY
After losing our precious Sam, I knew I had to honour his memory in a way that would make a difference. In 2021, I founded Sam’s Superheroes Foundation (Registered Charity: 1210458) to turn our grief into action and ensure his legacy lives on.
Our mission is simple: to fund vital research into FIRES (Febrile Infection-Related Epilepsy Syndrome), find effective treatments, and one day, a cure. No family should endure the heartbreak we did.
Sam’s Superheroes is more than a charity—it’s a movement to bring hope, drive change, and make sure Sam’s bright spirit continues to inspire. Every breakthrough, every fundraiser, and every step forward is part of his lasting legacy.
In Sam’s name, we fight for answers, awareness, and a future without FIRES.