BE A HERO
FOR KIDS LIKE SAM
In memory of Sam we support children and adults affected by FIRES and NORSE, devastating and rare forms of epilepsy, with no known cure.
Our mission is to fund vital medical research, raise awareness, and provide financial help to families. We also support children's mental health by funding animal-assisted and creative therapies.
FIRES and NORSE strike without warning in healthy individuals. Within hours they trigger life-threatening, relentless seizures, that are exceptionally difficult to stop.
Tragically one in five children do not survive the acute stage. Researchers believe these seizures are triggered by a virus that causes a rare and abnormal immune or inflammatory response in the brain.
OUR SERVICES
We support families affected by FIRES and NORSE by:
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Funding vital medical research to improve treatments and help find a cure.
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Raising awareness of these rare, life-changing epilepsies to improve understanding and early recognition.
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Providing family grants to ease the physical, emotional, and financial burden of living through these conditions.
We also care deeply about children’s mental health. That’s why we:
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Fund animal-assisted therapy to bring comfort and connection.
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Provide creative therapy toolkits to support emotional expression and healing.
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Share the joy of our very own therapy dog, Daisy — a friendly black Labrador who brings smiles and support wherever she goes.
SAM'S STORY
Sam was a much loved, beautiful, and loving five-year-old boy. He loved the outdoors, Lego, all things superhero, and his beloved dog, Daisy. Sam was incredibly kind, wise beyond his years and loved life. He brought joy and light to everyone around him.
In March 2021, Sam fell critically ill following what seemed like a routine virus. With no history of epilepsy, or any underlying conditions, he was suddenly struck by FIRES (Febrile Infection Related Epilepsy Syndrome) - a rare and devastating condition that triggered relentless, explosive seizures. FIRES is believed to affect just one in a million children. There is no known cure.
Despite spending seven weeks in a medically induced coma at Queens Medical Centre, Nottingham undergoing intensive treatments, and showing extraordinary bravery, Sam tragically passed away in his parent's arms on 8th May 2021. He died from catastrophic and irreversible brain damage caused by the continuous seizures. To read more about Sam's story click on the button below.
In his memory, we created Sam's Superheroes Foundation, to honour his life, and fight for others affected by FIRES and NORSE. We fund and champion critical medical research, raise awareness, and provide grants to families navigating these rare epilepsies. We also support children's mental health through animal-assisted therapy and creative therapy toolkits.
Together, we can bring hope to children like Sam - and ensure no family faces this journey alone.
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HEROES ASSEMBLE!
Join our Mission to Raise £50,000!
Little is known about FIRES. With no clear cause, no definitive treatment, and most heartbreakingly no cure. Whilst it’s thought to be a rare immune/inflammatory response to a minor viral infection, research is only just beginning to uncover its mechanisms.
Medical research is the key to unlocking answers, and funding is crucial to driving progress. Without research, FIRES and NORSE will continue to steal the lives of innocent healthy children and adults, devastating families lives.
We are on a mission 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.
MEET DAISY THE SUPER THERAPY DOG
Daisy is more than just a therapy dog, she is actually Sam’s beloved black labrador. They were joined at the hip. She visited Sam when he was in critical care and brought Sam’s entire family immense comfort.
Daisy is now the star of our charity; a source of comfort, joy, and healing for children facing mental and emotional health challenges. With her wagging tail and gentle nature, Daisy has a special way of making children smile, easing anxiety, and bringing warmth to tough days.
Whether she’s visiting children in therapy sessions or lending a paw of support during difficult times, Daisy embodies the love and hope that Sam’s Superheroes stands for.
Fun Fact: Daisy loves belly rubs and is an expert at cheering people up with her playful spirit!
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ABOUT FIRES
FIRES (Febrile Infection-Related Epilepsy Syndrome) is a rare and devastating form of epilepsy that begins suddenly, often after a mild fever or viral illness. It rapidly progresses - over hours or days - into relentless, life-threatening seizures that are extremely difficult to control. It is thought that a virus triggers an abnormal immune reaction or inflammatory response in the brain.
FIRES usually occurs in children with no history of epilepsy, and with no underlying condition. However, it can also affect adults. Treatment typically involves weeks or months in critical care, including in a medically induced coma, to try to stop the seizures and protect the brain.
Tragically, around 1 in 5 children do not survive the acute phase. Those who do often face lifelong neurological disabilities, including drug-resistant epilepsy, cognitive challenges, and physical impairments.
FIRES is a subcategory of NORSE (New-Onset Refractory Status Epilepticus) the key difference being that FIRES follows a febrile illness.
There is currently no cure and limited understanding of what causes FIRES. Research remains scarce, but is urgently needed to uncover the underlying mechanisms, improve treatment options, and one day, find a cure.
HELP FIGHT FIRES
Your donation can drive groundbreaking research, offer animal-assisted therapy, deliver creative therapy toolkits to children in hospitals, and provide essential financial grants to families navigating life with FIRES (and NORSE).
Every contribution matters. Whether it's a one-time gift or ongoing support, you're helping us bring hope, care, and progress to those who need it most.
Join us in honouring Sam’s legacy. Together, we can make a real difference.
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