Families Driven by Love: Three UK NORSE & FIRES families United by Loss and a Determination to Create Change
- May 29
- 3 min read
Three families. Three previously healthy sons. Lives cruelly cut short by the rare epilepsies known as NORSE and FIRES.
No history of epilepsy. No warning signs. No underlying neurological conditions.
The seizures were explosive, relentless and catastrophic. They came completely out of the blue — and couldn't be stopped.
On Thursday, three of our NORSE and FIRES UK families who have had their worlds changed forever travelled to London. They were united by tragedy, love and a determination to create change.
🩵 Joe's mum, Lyndsey. Joe died from NORSE in December 2024 aged 29.
🩵 Adrian's dad, Carlos. Adrian died from FIRES in February 2026 aged 8.
🩵 And me, Rachel, Sam's mum. Sam died from FIRES in May 2021 aged 5.
Behind the camera was Joe’s beautiful partner, Zara.
We came together to attend the Epilepsy Research Institute’s reception at the Royal College of Physicians, where they announced 11 new research investments for 2026/27 — totalling £1.39 million.
This year’s research announcement was deeply meaningful for all of us — and will be for many other families whose loved ones are living with, or who have sadly died from, NORSE and FIRES. We will be revealing more next week, but let’s just say this is one of the biggest, proudest and most impactful moments in our charity’s journey so far.
We still don't know what causes NORSE and FIRES, and there is currently no cure. This research will help shape the future of how epilepsy is understood and treated. Ultimately, research is the only way we will ever prevent other families from facing the horrors of NORSE and FIRES.
And one thing I am quickly learning through rare disease advocacy is this: never underestimate the power of families driven by love.
Behind so many advances in awareness, research, support and policy are ordinary people navigating extraordinary loss and trauma — who simply refused to accept the status quo.
Whilst only three families attended, we also represented the wider UK NORSE/FIRES community. And, to our knowledge, this was the first time three UK families bereaved by NORSE/FIRES had ever come together in person.
Whilst in London, we also met with a family member whose loved one had only recently been diagnosed with NORSE/FIRES, to offer support and remind them that they are not alone.
But the week didn’t stop there.
The following day, we travelled to Cambridge to attend a wonderful two-day event in memory of Adrian, raising both funds and awareness for our charity. More on that later ❤️
I am feeling incredibly grateful for all the work, collaboration and support happening behind the scenes right now.
We are incredibly busy — but busy with purpose.
For Joe. For Adrian. For little Sam. For Big Sam. For every family affected by NORSE & FIRES.
To read more about our families and their stories, visit our Meet Our Families page.
There is still so much work to do. But in a short space of time, we have already made more impact than we ever imagined possible.
We have seen what can happen when families, researchers, clinicians and supporters come together with a shared determination to create change - and this is only the beginning!
More exciting news next week 💖
In the meantime, remember - there is nothing more powerful than love 🩷
Rachel, 'Little' Sam's mum
Founder, Trustee & Director
Sam's Superheroes Foundation
Research | Awareness | Family Support
For rare epilepsies — NORSE & FIRES.
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