I lost my beautiful son, 5, to a rare condition - now I'm honouring his memory with an epic challenge
A mum from Blackpool has organised an epic charity scooter challenge to raise £50,000 and awareness for the devastating condition that took her son's life.
Rachel Liew’s son Sam was a vibrant and loving five-year-old when his life was tragically cut short by Febrile Infection-Related Epilepsy Syndrome (FIRES).
FIRES is a rare and catastrophic form of epilepsy that typically affects previously healthy children and adolescents.
Determined to honour Sam’s memory and support other families affected by the condition, Rachel has launched Sam’s Big Scoot challenge – a 44-mile journey on traditional kick scooters.
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Sam loved his own bright red scooter and Rachel, who was born and raised in Blackpool, plans to tackle the challenge carrying it on her back, ensuring he is still part of the team.
Rachel, who runs the charity Sam’s Superheroes Foundation, said: “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.”
She will be joined on the three-day journey by her sister Rhiannon Jones, who was headteacher of Kirkham and Wesham Primary School, in Nelson Street, for almost a quarter of a century before retiring after a 33-year teaching career.
Rachel is also appealing for support from businesses and organisations to sponsor the event or provide hands-on support in the form of scooters, team transport, filming and editing, sports kits, helmets, finishing medals and hotel stays and refreshments.
“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,” Rachel added.
“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.”
The challenge is being supported by a team of NHS doctors and research fellows from Great Ormond Street Hospital and Aston University, Birmingham who are at the forefront of UK children’s FIRES research.
Dr Marios Kaliakatsos, consultant neurologist at Great Ormond Street Hospital, in London, said: “FIRES patients and their families are etched in the clinician’ s heart forever.
“Scoot with us in Sam’ s memory to support further research. Let’ s make Sam one of the last children to lose their life or childhood due to this devastating disease.”
The challenge will begin at Aston University in Birmingham, home of the first and only UK FIRES research centre, and end in Derby where Rachel now lives.
Starting on September 20, it will be a three-day journey with two overnight stops and to date 40 people – including Sam’s 85-year-old Nana who also lives in Blackpool - have agreed to take part.
Since Sam’s death in 2021, Rachel has been sharing his FIRES story with doctors, researchers and the wider community to raise awareness and support the critical need for research.
In 2023, she was a guest speaker at the NORSE Institute's International Conference, which was founded by Nora Wong who lost her son from FIRES in 2013.
The NORSE Institute is the leading global expert on FIRES.
This year she shared Sam’s story at the UK’s Epilepsy Research Institute’s reception in London where she also introduced the dedicated researchers leading the very first UK FIRES Research study.
There are four sponsorship packages available for businesses – ranging from £200 to £3,000 – and multiple opportunities to help support the challenge.
If you think you can help please contact Rachel by email [email protected] or telephone 07880 343416