DEVOTED mum Rachel Liew is turning her personal tragedy into a beacon of hope by organising an epic charity scooter challenge to raise £50,000 and awareness for the devastating condition that took her son’s life.
Rachel’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), 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 from Aston University in Birmingham, home of the first and only UK FIRES research centre, to Sam’s home of Mickleover, in Derby.
Starting on September 20, it will be a three-day journey with two overnight stops in Lichfield and Burton on Trent, and to date 40 people – including Sam’s 85-year-old Nana – have agreed to take part.
Sam loved his own bright red scooter and Rachel plans to tackle the challenge carrying it on her back, ensuring he is still part of the team.
Now Rachel is appealing for support from businesses and organisations to sponsor the event or provide hands-on support in the form of scooters, team transport to Birmingham, filming and editing, sports kits, helmets, finishing medals and hotel stays and refreshments.
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.
“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.”
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.”
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 rachel@samsuperheroes.co.uk or telephone 07880 343416
