BE A HERO
Sam's Superheroes Foundation supports children and adults affected by
NORSE and FIRES - life threatening types of rare epilepsy. The seizures strike without warning, rapidly escalating into nonstop seizure activity that doesn't respond to treatments. One in five do not survive the acute stage; survivors
often face life-changing neurological disabilities. There is no cure.
FOR KIDS LIKE SAM
We fund research, raise awareness, and support families affected by NORSE
and FIRES. In addition, we fund animal assisted and creative therapies
supporting children with their mental health.
NORSE and FIRES are rare types of epilepsy. FIRES is a subcategory of NORSE.
They strike without warning in previously healthy people, with no history of epilepsy. Within hours they can trigger life-threatening, relentless seizures, that are exceptionally difficult to stop. There is no cure.
One in five people do not survive the acute stage. Survivors often face significant neurological disability.
Growing evidence suggests that immune dysregulation plays a significant part in NORSE and FIRES. It is thought to cause an abnormal inflammatory response in the brain resulting in aggressive, relentless, and treatment-resistant seizures.
OUR SERVICES
We support families affected by NORSE and FIRES by funding vital research, raising awareness, and providing grants and practical support.
We also support children’s mental health by funding animal-assisted therapy (including with Daisy, our superhero black Labrador) and providing creative therapy toolkits for children facing emotionally challenging times.
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 simple virus. Sam had no history of epilepsy, or any underlying conditions, when 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 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 Sam's memory, his mum Rachel created Sam's Superheroes Foundation, to honour his life, and fight for others affected by NORSE and FIRES. 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 and creative therapies.
Together, we can bring hope to families, and to children like Sam, by ensuring no UK family faces this journey alone and by relentlessly pursuing answers to NORSE and FIRES.
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HEROES ASSEMBLE!
Join our Mission to Raise £50,000!
Little is known about NORSE and 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 virus/illness, research is only just beginning to uncover its mechanisms.
Funding medical research is the key to unlocking answers into these rare epilepsies. Without research, NORSE and FIRES will continue to steal the lives of innocent healthy children and adults - devastating families lives.
Sam's Superheroes is on a mission to raise £50,000 to fund part of a monumental £110,000 research collaboration with the prestigious Epilepsy Research Institute to try and find answers to NORSE and FIRES. This will be only the second UK research study into these rare epilepsies.
Every donation, no matter how big or small, takes us a step closer to understanding this epilepsy, 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 NORSE and FIRES
NORSE and FIRES are unstoppable, prolonged seizures that strike suddenly in people with no history of epilepsy, and without a clearly identifiable cause.
NORSE stands for New Onset Refractory Status Epilepticus.
FIRES stands for Febrile Infection Related Epilepsy Syndrome and is a subcategory of NORSE. The key difference between the two is that FIRES follows a febrile illness. FIRES usually occurs in children, but it can also affect adults.
The seizures normally start after what seems like a mild virus such as a cold, flu or upper respiratory or gastrointestinal symptoms. The symptoms are common to many illnesses. Family, friends or doctors could not have identified or prevented NORSE and FIRES by these early symptoms, as they are so common.
The seizures begin aggressively and rapidly escalate over hours or days into relentless, life-threatening seizures that are extremely difficult to control.
In around half of NORSE cases no cause is identified despite extensive testing - these are termed cryptogenic NORSE. There is usually no known cause for FIRES.
Growing evidence suggests that immune dysregulation and neuroinflammation contribute to the relentless, treatment-resistant seizures seen in many cryptogenic cases.
Treatment typically involves weeks or months in critical care, including in a medically induced coma, with multiple medications and treatments, including immunotherapy, to try to stop the seizures and protect the brain.
Urgent seizure control is vital. Relentless seizures can damage the brain - causing neuronal injury and swelling. This is life-threatening and seizures must be stopped urgently.
Around 1 in 5 don’t survive the acute phase; many survivors live with lifelong disability, and difficult to control epilepsy. Urgent seizure control is critical.
There is no cure and little understanding. Urgent research can change that - revealing causes, improving treatment, and bringing us closer to a cure.
HELP FIGHT FIRES
Your donation can drive ground breaking research and awareness, 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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