A group of almost 20 people battled blisters, flat tyres, thunderstorms and torrential rain to kick scoot more than 50 miles in memory of a little boy from Mickleover.
Friends and family of Sam Liew took part in the epic challenge which was organised by his mum Rachel who aims to raise £50,000 to fund research into the extremely rare condition that took his life when he was just five years old.
Sam was a happy and healthy little boy when he developed a rare and catastrophic form of epilepsy, called Febrile Infection-Related Epilepsy Syndrome (FIRES).
Determined to honour Sam’s memory and support other families affected by the condition, the kick scooter challenge started from Aston University in Birmingham, home of the first and only UK FIRES research centre.
The epic journey took three days and neurologists from Great Ormond Street Hospital and research fellows from Aston University joined the core team, which was led by Rachel, who carried Sam’s own bright red scooter with her.
Sadly, the severe weather meant the family fun day planned for the finish line had to be cancelled, but so far, the team have raised £13,500 towards their target.
Rachel, who runs the charity Sam’s Superheroes Foundation, said: “We were not beaten by the utterly horrific weather – in fact the more it rained the more determined we became to finish. I think we would have scooted through a tornado.
“The whole team were doing it out of their love for Sam and not wanting any other child to suffer or lose their life like my beautiful boy. They have trained hard for over four months, given up their precious time, spent their hard-earned cash on scooters, kit, hotels, food and drink whilst away. And they have never complained or faltered.
“They are the most amazing team I could wish for, and I include my backup team in all this. We will keep going until we reach our £50k target – it is vital that we find a cure for FIRES and we won’t stop until we do.”
If you would like to know more, or make a donation please visit: Crowdfunding to fund UK research into FIRES (Febrile Infection Related Epilepsy Syndrome). We couldn’t save Sam, but we need to save other children. on JustGiving
