OUR MISSION
Sam’s Superheroes Foundation was created in 2021 to honour the life of
our much loved son, Sam, who tragically passed away at just five years old
from FIRES (Febrile Infection-Related Epilepsy Syndrome).
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We support children and adults impacted by FIRES and NORSE (rare,
catastrophic and sudden on-set types of epilepsy) by funding critical research, raising awareness, and providing financial grants to families.
We are also passionate about supporting children’s mental health. We fund animal assisted and creative therapies, and proudly work alongside our own Therapy Dog to provide emotional support for young people.
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As a registered charity (No. 1210458), we’re committed to creating lasting impact impact - through research, care, and compassion.
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.
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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.
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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.
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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 FIRES
FIRES (Febrile Infection-Related Epilepsy Syndrome) is a rare, aggressive and catastrophic type of epilepsy that strikes suddenly and explosively, rapidly escalating over a matter of hours or days into life-threatening, relentless and difficult to control seizures. The cause of FIRES is still not understood although it is thought to be an overwhelming inflammatory response to a mild viral illness.
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FIRES typically strikes healthy children, with no history of epilepsy and with no underlying conditions, although adults may also be effected. Children require weeks or months in a medically induced coma to try and protect the brain and stop the seizures, undergoing intensive and complex treatments. One in five children won’t survive the acute phase, and survivors often face significant neurological disability.
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FIRES is considered a sub-category of NORSE (New-Onset Refractory Status Epilepticus). The only difference between the two conditions is that FIRES occurs after a febrile illness.
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With no cure and limited research, both FIRES and NORSE remain poorly understood leaving families with unanswered questions, limited treatment and little hope. Our goal is to change that.
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LACK OF RESEARCH
Despite its catastrophic impact, FIRES remains desperately under-researched and under-funded.
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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.
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At Sam’s Superheroes Foundation, we are committed to changing that.
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We raise vital funds and awareness to drive more research that could lead to better treatments, clearer answers, and ultimately - a cure.
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 research, drive awareness and collaborates with the NORSE Institute (the global leader in FIRES research) in the United States and the Epilepsy Research Institute.
Rachel is also passionate about the benefits of animal-assisted therapy for young people. The charity funds various animal-assisted therapy programs to support children and teens struggling with their mental health, including funding visits to the children’s wards at QMC Nottingham, where Sam spent time his in critical care battling FIRES.
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Rachel and Daisy, Sam’s beloved black Labrador, regularly visit schools and organisations across Derbyshire and beyond, offering Therapy Dog sessions to help young people with their emotional and mental wellbeing.
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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.
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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.
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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.
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To book Rachel for speaking engagements, please contact her:
Phone: 07880 343416
Email: rachel@samssuperheroes.co.uk
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For press and media enquiries, please contact Sarah Newton at Penguin PR:
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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.
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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.
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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.
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Our Therapy Dog Work includes work with the following organisations:
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Silverhill Primary School, Mickleover
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Castle School, Derby (part of the Respect Collaboration of Schools)
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St Thomas Catholic Primary School, Ilkeston
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Bridge the Gap, Child Mental Health, Derby
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Lunar Mind, Derby
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Daisy’s work continues to make a profound impact, spreading Sam’s warmth and energy wherever she goes.
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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.
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Millie Saunders – Deputy Safe Guarding Lead
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Rhiannon Jones – Safe Guarding Lead
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