'We couldn’t save my beautiful brave little boy...' one mum's heartbreak after losing her son

A mum is turning a family tragedy into hope for others, by organising a charity scooter challenge in memory of her late son.

Rachel's son Sam was 'a fun-loving' five year old boy, sadly had his life was cut short in 2021 by a catastrophic form of epilepsy, called Febrile Infection-Related Epilepsy Syndrome (FIRES).

Blackpool-born Rachel now runs the charity Sam's Superheroes Foundation and spoke of her mission: "We couldn’t save my beautiful brave little boy, but we must try to save other children and I am completely committed to raising money for research into this catastrophic and devastating syndrome."

"It's not yet understood what causes FIRES, and there are no known effective treatments. FIRES is also desperately under-researched, with the first and only UK research starting in 2023. We have to stop other families going through the horrific loss we have experienced, and I would urge anyone who can help – in any small way – to get in touch with us."

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To honour Sam's memory and help other families who have suffered similar losses, she will be launching Sam's Big Scoot challenge, a 44 mile journey on traditional kick scooters. Rachel's sister, Rhiannon Jones, a 56-year-old retired primary school head, will also join the challenge alongside Sam's 85-year-old Nana in order to raise awareness of the epilepsy that claimed the life of her grandson.

Sam adored his beloved bright red scooter and Rachel plans to carry it on her back during the challenge, making sure Sam is still part of the team. She is also appealing to businesses and organisations for support and to sponsor the event.

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