Organised by Sam's Superheroes FoundationWe’re raising £50,000 for FIRES research in memory of Sam, who lost his life at age 5. FIRES strikes healthy children without warning, 1 in 5 don’t survive and there’s no cure. Help us fund vital research, raise awareness, and bring hope to families.
Help Us Raise £50,000 for children's FIRES Medical Research. Be a Hero and Save Kids Like Sam.
We are embarking on an urgent mission to raise £50,000 for children's medical research to help find a cure for FIRES (Febrile Infection-Related Epilepsy Syndrome). This devastating disease strikes children without warning, leaving a path of destruction in its wake. No parent should have to endure the heartbreak of losing their child to this cruel disease.
We want to make my son, Sam, one of the last children to lose their life to FIRES. This research is essential to saving other children and protecting families from unimaginable loss. By supporting this cause, you become a HERO in the fight against FIRES.
FIRES (Febrile Infection Related Epilepsy Syndrome) is a rare and catastrophic neurological disease that affects previously healthy children, following a viral infection. It is thought to be an overwhelming inflammatory response to a minor viral infection which triggers relentless, explosive seizures that are extremely difficult to control.
Children with FIRES require weeks or months in medically induced comas, undergoing intensive and complex treatments to try to control the seizures. Despite these efforts, most treatments have poor results, and in some cases the seizures can't be stopped - with one in five children not surviving the acute stage. Children who survive are frequently left with significant neurological disability and lifelong epilepsy.
FIRES can happen to any child, at any time, with no warning signs. Before FIRES, Sam was a happy, healthy five-year-old with no history of epilepsy. It appeared out of nowhere following what we thought was a minor viral illness, and our lives changed forever. After fighting for 7-weeks in intensive care, Sam tragically lost his fight against FIRES. No child should ever lose their life to this horrific disease and no parent should ever have to experience this nightmare and the loss of their child.
Little is known about FIRES. There is no clear cause, no definitive treatment, and - most heartbreakingly - no cure. Whilst it is thought to be a rare immune/inflammatory response to a minor viral infection - research is only just beginning to uncover its mechanisms.
When a child is struck down by FIRES the impact on families is profound, turning lives upside down in an instant. This disease is cruel, relentless, and drastically under-researched. The first and only UK research study into FIRES only began in 2023 - funded by the Epilepsy Research Institute. More funding is desperately needed to continue this research to learn the causes, find better treatments, with the ultimate goal of finding a cure.
Medical research is the key to unlocking answers, and funding is crucial to driving progress. Without research, FIRES will continue to steal the lives of innocent healthy children and devastate families lives.
We need to raise £50,000 to fund vital research that could save children like Sam. Every donation, no matter how big or small, takes us a step closer to understanding this disease, improving treatments, and ultimately finding a cure.
I never imagined something like this could happen to my child. But it did. And if we don’t act now, it will continue to happen to other children.
Your support will directly contribute to:
- Funding vital children's medical research into the causes and potential treatments for FIRES.
- Raising awareness among the medical community and the public to ensure earlier recognition and intervention.
- Providing hope to families battling this disease, so they know they are not alone.
- Every pound raised is a step towards a future where FIRES no longer destroys lives.
JOIN US IN THE FIGHT AGAINST FIRES. Your generosity can change lives. By donating today, you are helping to fund life-saving research and giving hope to families affected by FIRES. Together, we can fight for a future where no child is lost to this cruel disease.
Please donate and share our story to help us reach our goal. Let’s make Sam one of the last children to lose their life to FIRES.
Sam was a loving five year old who adored the outdoors, Lego, superheroes, and his dog Daisy - a black Labrador. Known for his kindness and wisdom beyond his years, he brought joy to everyone around him.
Back in March 2021, a few weeks after his 5th birthday we were catapulted head-first into a fight to save his life from the sudden onset of FIRES. We didn’t know it at the time, but 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 simple childhood virus - but he also had a high and difficult to control temperature and a strange red rash on his cheeks. Throughout the weekend we sought medical advice, and all thought it was a routine virus. On the fourth day, we thought he was getting better, but his high temperature suddenly returned and minutes after arriving home from a doctor’s appointment Sam had his first ever seizure. He proceeded to seize without regaining consciousness for 35 minutes.
Below is a photo of Sam the day before he fell ill with FIRES. Medical professionals thought he had a simple virus. We now know this was the start of FIRES - just 24 hours after this photo was taken later he was fighting for his life.
Sam was immediately rushed to Derby Royal hospital and went on to have further seizures. Within eight hours he was placed into an induced coma as he went into respiratory arrest. It was terrifying - the doctors and nurses were panicking - I thought I was going to lose him. He was quickly transferred to the critical care unit at Queens Medical Centre Nottingham, a neurology centre to receive the expert care he so badly needed.
Sam was kept in an induced coma and his medical team initially felt his outlook was positive. It was believed an infection was the root cause of his seizures - there was a huge protocol of medication that could be given to stop them. However, 24 hours later after a whirl wind of activity around him, it was clear stopping his seizures was proving an impossible task. Whilst medications would initially work, his seizures would restart again and his team were struggling to keep him stable. It was utterly terrifying.
We were witnessing things no parent should ever have to see and hear and watching 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. Sam was fighting for his life day in and day out, alongside his awesome medical team.
Trying to stop Sam's seizures whilst keeping him alive was hugely complex, he had multiple medications, innovative treatments, and complications. But after seven weeks in critical care despite all these treatments, despite the world leading care and despite the non-stop fight of our son and everyone involved, his seizures couldn't be stopped. It was acutely distressing not only for us his family, but for everyone involved in his care.
After his fourth MRI scan, Sam’s team said the heart-stopping words no parent should ever have to hear. The seizures had caused 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. And so, in the space of 7 short weeks our entire world fell apart. It was destroyed by a disease we had never heard of and which had no cure.
As parents who loved our son so very very much, in our hearts we knew had to do the right thing for our child. We simply couldn’t allow him to suffer any more than he was. Despite our overwhelming urge to keep fighting and our feelings of utter heartbreak and devastation we knew we had to support their decision.
And so our beautiful baby boy had his breathing tub removed and he passed away surrounded by love in his mummy and daddy's arms on the 8th May 2021, exactly 5 years and 2 months old. And from that point on our entire world fell apart and changed for ever.
FIRES is every parents worst nightmare. Whilst it is rare, there are children currently fighting FIRES in the UK and all around the world. We need to #FindACureForFIRES to stop other children and families from having their lives destroyed by this horrific syndrome.
To learn more about Sam's FIRES story click here .
Below is a photo of Sam and Daisy, his black Labrador, dressed up for Halloween in October 2020 and a photo from when Daisy was visiting him in paediatric critical care at Nottingham's Queen's Medical centre.
Below is another photo of beautiful Sam in paediatric critical care. He was on multiple medications and innovative treatments to try and stop his seizures. Whilst medications would initially work, he would start seizing again. FIRES is cruel, horrific and catastrophic. If children survive, they are highly likely to have significant neurological disability.
Sam was beautiful, kind, loving, caring and joyful. He adored cuddling up to his dog Daisy and exploring the great outdoors. Shy with people he didn’t know, he was articulate and had wisdom beyond his years. Sam loved superheroes and making his family and many friends laugh!
Here is a photo of Sam modelling his new school uniform, with his mummy, at his nana and grandpa's house in Blackpool. He was so excited to be starting Primary School. Sam fell ill just over six months later.
A few more beauties of our boy!
We are thrilled to be partnering with an incredible team of NHS Doctors, Scientists, and Research Fellows from Great Ormond Street Hospital and Aston University, Birmingham. These experts are at the forefront of UK children’s FIRES research and some of them are shown in the photo below.
The photo was taken at the UK's Epilepsy Research Institute's 'The Promise of Research' Reception, in London, May 2024.
Left to right: Dr Marios Kaliakatsos, Dr Sukhvir Wright, Rachel Liew - Sam’s mum, Dr Evangelia Ioannidou and Dr Dimitrios Champsas
Dr Ioannidou Great Ormond Street Hospital, London says:
"Hope transforms into action through charity. Together, we can turn Sam's hope for a FIRES cure into reality by supporting research with our enthusiasm & donations"
Dr Kaliakatsos, Consultant Neurologist, Great Ormond Street Hospital, London says:
“The FIRES patients and their families are etched in the clinician’s heart forever. Support our fundraiser in Sam’s memory and help our research so that he is one of the last children who lose their life or childhood due to this devastating disease”
Our first fundraising challenge for FIRES medical research kicked off on Friday, 20 September 2024. We carried out an EPIC KICK SCOOT from Aston University in Birmingham, home of the first UK FIRES research, to Sam’s hometown of DERBY. We scooted over 50 miles over three days fuelled on pure muscle power and sheer determination!
BBC news article on our Scooter Challenge: click here
Below is some of our scoot team at the start line at Aston University in Birmingham.
Holding the banner is (left) Dr Wright, paediatric neurologist and clinical researcher who is co-lead of the only UK FIRES research at the Aston Institute of Health & Neurodevelopment.
Below is a photo of Sam's mum (center) with doctors from Great Ormond Street Hospital, the UK FIRES experts. They joined her on Sam's BIG Scoot!
Here is a link to a video from the final day of our scoot - showing the torrential rain! click here
Our team included NHS Doctors and Research Fellows from Great Ormond Street Hospital and Aston University Birmingham - the experts at the forefront of UK children’s FIRES research.
We had a core team who scooted for three full days, plus a tag team. On the final day, we were joined by Sam’s friends and our supporters as we made the final journey into his hometown. Sam was at the heart and soul of this challenge, we chose to kick scoot as Sam adored his red scooter and rode it everywhere. His scooter was tied on the front of my scooter throughout the challenge, ensuring Sam was with us - see below.
Here is a photo of our gorgeous Sam with his famous red scooter!
Since Sam died, I am committed to #FindACureForFIRES. I have shared Sam’s FIRES story with doctors, researchers and the wider community to raise awareness and the critical need for research. This included sharing my personal diary extracts click here from when Sam was fighting FIRES.
In 2023, I was a guest speaker at the NORSE Institute International Conference click here
In 2024 I shared Sam’s story at the UK's Epilepsy Research Institute Reception in London. click here.
To read more about Sam's FIRES story click here
Thank you for your support in this urgent, life saving mission.
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