OUR MISSION
Sam’s Superheroes Foundation is a mum-founded charity dedicated
to improving outcomes for people affected by the RARE EPILEPSIES
NORSE and FIRES.
​​
These catastrophic epilepsies affect previously healthy children and adults and cause sudden, out-of-the-blue, non-stop seizures, often after a mild illness. There is no cure and no clear understanding of the cause, although research suggests they may be immune-driven. Outcomes are frequently devastating.
​
Alongside our research, awareness and family support work, we run a therapy-dog service for young people and fund creative therapy packs to children in hospital to bring comfort, calm and connection during a scary and frightening time.
ABOUT SAM
Sam was the light of our lives and deeply loved. A joyful, kind, and curious child, he had a wonderful imagination and found magic in life’s simplest pleasures - turning sticks into swords, building train tracks and Lego, and marvelling at the world around him.
​
He loved splashing in puddles in his wellies, riding his bike and kick scooter, collecting stones at the beach, and belly laughing at the silliest of jokes - many of his own! His infectious love of life and nature touched everyone who knew him.
​
Sam also shared a special bond with Daisy, his black Labrador. She was his constant companion, source of comfort, and partner in play - a true best friend.
​
Sam adored superheroes and often dressed as his favourites - never knowing he’d become one himself. His bravery and spirit live on through Sam’s Superheroes Foundation - a lasting legacy of his courage, kindness, and joy.
ABOUT NORSE and FIRES
NORSE (New Onset Refractory Status Epilepticus) is a rare and catastrophic epilepsy that strikes suddenly in people with no history of seizures and with no clearly identifiable cause.
​
FIRES (Febrile Infection Related Epilepsy Syndrome) is simply a sub-type of NORSE, usually affecting children (though adults can be affected too). FIRES begins after a fever or febrile illness.
​
In around half of NORSE cases, no cause is found despite extensive testing — this is called cryptogenic NORSE.
​
What happens in NORSE and FIRES
​
Seizures begin without warning and escalate rapidly over hours or days into relentless, life-threatening, non-stop seizures. This is called refractory status epilepticus.
They often follow what seems like a mild viral illness - a cold, flu or stomach bug - something so common that no family or doctor could have predicted or prevented.
​
Growing evidence suggests that immune dysregulation and neuroinflammation may drive the aggressive, treatment-resistant seizures seen in many cryptogenic cases.
Treatment usually requires weeks or months in critical care, often involving:
​
-
medically induced coma
-
multiple anti-seizure medications and anaesthetics
-
immunotherapies
Urgent seizure control is critical to prevent brain injury and swelling.
​
​
Outcomes
​
The outlook is devastating:
​
-
around 1 in 5 do not survive the acute phase
-
survivors can often face significant neurological disabilities and life-long epilepsy
​
​
Why Research Matters
​
There is currently no cure and little understanding of the underlying causes.
​
NORSE and FIRES are rare, sudden and catastrophic - and desperately under-researched.
More research is urgently needed to:
​
-
uncover the underlying causes
-
develop better and faster treatments
-
improve outcomes
-
bring us closer to a cure
.png)
LACK OF RESEARCH
Despite the catastrophic impact of NORSE and FIRES they remain desperately under-researched and under-funded.
​
This lack of knowledge leaves medical professionals and families in the dark - desperately searching for treatments that can save lives and improve outcomes for survivors.
​
At Sam’s Superheroes Foundation, we are committed to changing that.
​
Through our research funding and advocacy together with awareness campaigns we are striving to improve the lives of those impacted by NORSE and FIRES.
MILESTONE REACHED!
We are incredibly proud to have reached our £50,000 research commitment on Christmas Day 2025, forming part of a £110,000 UK research collaboration with the Epilepsy Research Institute to support UK-led research into NORSE and FIRES. Learn more about this research by clicking here.
​
This is all thanks to your support!
MEET OUR FOUNDER:
Rachel Liew
Rachel Liew, Sam’s devoted mother, founded Sam’s Superheroes Foundation to create a lasting legacy for her son and raise awareness of FIRES. As the driving force behind the charity, Rachel oversees its daily operations and works tirelessly to fund and advocate for research, drive awareness and improve family support.
​
Rachel has developed our close collaboration with the NORSE Institute, and the Epilepsy Research Institute which strengthens our ability to drive change, influence research, and support families across the UK and beyond.
​
She is also now UK Country Lead and Ambassador for the NORSE Institute - where she is proud to contribute to their global mission. Together, they work to raise awareness, advance research, and strengthen support for families affected by NORSE and FIRES worldwide.
​
Rachel works closely with the UK doctors and researchers leading the UKs NORSE and FIRES research efforts, together with the families impacted by it. Together, they lead the fight against NORSE and FIRES, in order to learn more, find more effective treatments and to one day find a cure.
Rachel is also passionate about the benefits of animal-assisted therapy for young people. She has set up a therapy dog programme for schools which is a chargeable service and supports children and teens struggling with their mental health.
​
​In 2023, she was a guest speaker at the NORSE Institute’s International Conference and shared Sam’s story at the UK Epilepsy Research Institute (ERI) Reception in London, where she introduced the pioneering team leading the UK’s first FIRES research study. More recently, she spoke at the ERI Board and Scientific Advisory Committee dinner, highlighting the urgent need for funding FIRES research.
​
In 2025, Sam’s Superheroes was proud to receive the Lots of Tots Charity of the Year Award, in recognition of Rachel’s inspiring Therapy Dog work with Daisy. Read more about the award here.
​
Rachel has shared Sam’s story multiple times on BBC Radio Derby, and has also been featured in local and national publications to raise awareness of FIRES and its devastating impact.
​
To book Rachel for speaking engagements, please contact her:
Phone: 07880 343416
Email: rachel@samssuperheroes.co.uk
​
For press and media enquiries, please contact Sarah Newton at Penguin PR:
​
Phone: 01332 416228
Email: sarah@penguinPR.co.uk
MEET DAISY THE SUPER THERAPY DOG
Daisy, a black Labrador, was Sam's beloved dog from the age of two, and they were inseparable. Her calm and loving nature mirrored Sam’s, and when Sam was in critical care, Daisy’s visits showed her remarkable ability to comfort and soothe. After Sam's passing, it felt natural for Daisy to become a key part of his legacy and the charity.
​
Trained by Brook Working Dogs and who will shortly become a certified Therapy Dog with PAWS, Daisy works alongside Rachel to provide animal-assisted therapy. She brings joy, healing, and Sam’s love to children in various settings.
​
In 2024, Daisy was honoured with a BBC Radio Derby Make a Difference Award – Highly Commended, in recognition of her incredible work as a Therapy Dog supporting children’s emotional and mental health.
🎥 Take a look at the video here to see why Daisy was nominated and just how special she is.
​
Our Therapy Dog Work includes work with the following organisations:
​​
-
Silverhill Primary School, Mickleover
-
Castle School, Derby (part of the Respect Collaboration of Schools)
-
St Thomas Catholic Primary School, Ilkeston
-
Bridge the Gap, Child Mental Health, Derby
-
Lunar Mind, Derby
​
Daisy’s work continues to make a profound impact, spreading Sam’s warmth and energy wherever she goes.
.png)
Sarah Leroux – Chair
Becky Sutton - Finance
Emma Plummer - Vice Chair
OUR TRUSTEES
Our trustees are a passionate group of individuals, all driven by a commitment to making a difference. Each of us brings unique skills and experiences to the table, but we share one common goal: to honour Sam’s legacy by supporting families affected by FIRES and NORSE and pushing for research that could save lives.
.png)
Millie Saunders – Deputy Safe Guarding Lead
_edited.jpg)
Rhiannon Jones – Safe Guarding Lead
_edited.jpg)