A Derby mum whose five-year-old son died from a rare neurological condition has spoken of her pride after her little boy and the charity set up in his name were recognised in the Houses of Parliament.
Rachel Liew’s son Sam died aged just five after developing Febrile Infection-Related Epilepsy Syndrome (FIRES) — a rare and life-threatening neurological condition that can strike without warning.
Since his death in 2021 Rachel has run the charity Sam’s Superheroes Foundation, which was highlighted by South Derbyshire MP Samantha Niblett during a recent parliamentary session.
The MP publicly called for a meeting with the Secretary of State for Health and Social Care to discuss increasing funding, improving research and strengthening clinical support for families facing these catastrophic conditions.
Rachel, who was in Parliament to hear the question being asked, said: “It means so much to hear Sam’s name spoken about in Parliament – it was an incredibly emotional moment. He was such a bright, funny little boy, and even though his life was far too short, his story is now helping to raise awareness of a condition that so few people have ever heard of.
“When Sam first became ill, everything happened so quickly and we felt completely lost. There was very little information, very little support, and very few answers. That’s something I wouldn’t wish on any family.”
She added that the recognition was not just for Sam, but for all families affected by FIRES, many of whom continue to face uncertainty delayed diagnosis and a lack of specialist care.
“Through Sam’s Superheroes Foundation, we want to make sure no other family has to go through this alone. We’re working to fund research, support families and push for better understanding of FIRES within the medical community.”
FIRES sits within a broader group of conditions known as New Onset Refractory Status Epilepticus (NORSE), in which previously healthy individuals develop severe, prolonged seizures with no clear cause, often requiring intensive care.
The Derby-based charity is now the UK’s only organisation dedicated to supporting families affected by FIRES and NORSE, while also funding vital research and raising awareness.
Ms Niblett said she was “deeply moved” by Rachel’s determination to turn personal tragedy into positive change, praising the foundation’s efforts to raise awareness and provide support.
Samantha said: “It was a privilege to meet Rachel Liew, a constituent and founder of Sam’s Superheroes Foundation, who spoke with such courage about the loss of her son, Sam. As a parent, it’s impossible not to be deeply moved by her story.
“Out of unimaginable grief, Rachel has built something truly meaningful – supporting other families, while driving awareness and raising funds for research into the rare and devastating conditions NORSE and FIRES.
“In the Chamber, I wanted to ensure that Sam’s story, and the experiences of families like Rachel’s, are heard. These conditions may be rare, but their impact is profound. There is a clear need for greater research, better coordination, and stronger clinical support so that no family feels alone in facing them.
“Rachel’s strength and determination are a powerful reminder of why this work matters, and I will continue to press for the attention and support these families so urgently need.”
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