OUR STORY
Sam Liew, from Derby in the UK, was five years old. Happy. Healthy. Full of life. Then FIRES struck without warning.
What began as a mild virus, suddenly turned into weeks of non-stop aggressive seizures, a medically induced coma, and devastating brain damage.
Sam died in May 2021, just seven weeks after he first fell ill. His relentless seizures could not be stopped causing catastrophic and irreversible brain damage.
We created Sam's Superheroes to try and prevent other families from having to endure the same heartbreak.
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ABOUT NORSE and FIRES?
NORSE (New Onset Refractory Status Epilepticus) and FIRES (Febrile Infection Related Epilepsy Syndrome) are rare, catastrophic epilepsies and neurological emergencies.
They strike suddenly in previously healthy children and adults -often following what appears to be a mild viral illness, something so common that what follows is impossible to foresee.
Within hours to days, the seizures escalate into explosive, non-stop activity that does not respond to treatments. Many patients require weeks or months in intensive care, often in medically induced comas.
Outcomes remain devastating.
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The underlying cause remains poorly understood.
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There is currently no known cure, or effective treatments.
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Around 1 in 5 people do not survive.
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While recovery is possible, many survivors are left with significant life-long neurological disability, chronic epilepsy and complex care needs.
These conditions are not typical epilepsy.
They are sudden.
They are aggressive.
They change families forever.
Despite their severity, NORSE and FIRES remain under-recognised, under-researched and poorly understood. Specialist family support is often lacking.
This is why urgent research, awareness and dedicated family support are essential.
That is why Sam's Superheroes exists.
OUR WORK
Everything we do is shaped by lived experience and driven by one clear aim: to improve survival and long-term outcomes in NORSE and FIRES through research, awareness and specialist family support.
THE FACES of NORSE and FIRES
Behind every face is a life - and a family - changed forever.
NORSE and FIRES do not discrimate.
They strike without warning.
They affect children and adults alike.
These are just some of the lives changed by NORSE and FIRES.
We create space for families to share their stories - their love, their grief, and the lifelong impact of NORSE and FIRES - because their voices matter, and their stories must be heard.
(Full stories coming soon.)
FROM COMMUNITY PROMISE to £110,000 of RESEARCH
What began as a £50,000 community pledge in Sam's memory has grown into a £110,000 UK-led research collaboration.
Together with the Epilepsy Research Institute, we are funding pioneering research into NORSE and FIRES - deepening understanding, improving treatments and moving closer to answers.
This co-funded PhD studentship is our largest milestone to date, and will likely start in 2026.
Because families facing NORSE and FIRES deserve more than hope.
They deserve progress.
Dr Kaliakatsos
Consultant Neurologist
Great Ormond Street Hospital
FIRES patients and their families are etched in the clinician's heart forever. Scoot with us in Sam's memory to support further research. Let's make Sam one of the last children to lose their life or childhood due to this devasting disease.
BECOME a FUNDRAISING HERO!
There are so many ways to support Sam's Superheroes - from cake bakes and fun runs to once-in-a-lifetime challenges.
Children, adults, schools, workplaces and community groups - everyone can play a part.
Every pound raised helps to:
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Fund life-saving research.
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Raise urgent awareness.
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Strengthen support for families facing NORSE & FIRES.
Because no family should face this alone.
Sam’s Big Scoot 2026!
This two-day, 55-mile KICK SCOOT takes you from Aston University in Birmingham to Sam’s hometown of Derby.
No electric scooters. Just determination, teamwork, and community spirit.
Along the way, we raise awareness, share Sam’s story, and spark conversations in every community we pass through.
📅 Saturday 19 - Sunday 20 September 2026
No experience is needed. Scooter hire available.
Once you try kick-scooting...you’ll be hooked!
Individuals, friends and company teams are all welcome.
Featured on BBC East Midlands Today.
MEET DAISY the SUPER THERAPY DOG
Daisy is more than just a therapy dog - she was Sam’s beloved black Labrador. They were joined at the hip. When Sam was in critical care, Daisy visited him and brought comfort to our whole family during the darkest of times.
We didn't know it at the time, but that was where Daisy's therapy journey began.
Today, she carries Sam's legacy forward.
She is now the star of our charity and the heart of our Therapy Dog programme - a source of comfort, joy, connection and healing for children facing mental, emotional and physical health challenges. With her gentle nature and wagging tail Daisy has a remarkable way of easing anxiety, encouraging communication and bringing smiles to tough days.
Through our therapy dog programme, Daisy visits six schools and supports around 60 children every week.
Her presence has also helped raise vital awareness of NORSE and FIRES in communities we may never otherwise have reached - something incredibly powerful for a rare disease charity.
Importantly, our Therapy Dog programme is fully self-sustaining. It operates as a paid service and does not rely on charitable donations to run. Income generated through visits helps strengthen the wider work of Sam's Superheroes Foundation, and funded sessions are available to ensure no child or school misses out due to cost.
Whether she’s providing one-to-one support or sitting quietly beside a child during one of their hardest moments - Daisy embodies the love, hope and action at the heart of Sam’s Superheroes Foundation.
Fun Fact: Daisy loves belly rubs and is an expert at cheering people up with her playful spirit!
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HELP us FIGHT
NORSE and FIRES
Every donation drives progress where it is needed most:
Fund vital research
to improve treatments and move closer to a cure.
Raise urgent awareness
to these catastrophic epilepsies are recognised earlier.
Support families
facing the unimaginable, ensuring no family walks this road alone.
Whether your gift is one-off, monthly, or raised through a fundraising challenge, you are turning heartbreak into action. Join us in honouring those we have lost - and fighting for those still facing NORSE and FIRES.
Together, we fund research.
Together, we raise awareness.
Together, we support families.
Together, we save lives.
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