Scooter ride for boy who died from rare condition

The mother of a boy who died from a rare form of epilepsy is planning a cross-county scooter ride in his memory.

Sam Liew, from Derby, was five when he died from seizures caused by Febrile Infection-Related Epilepsy Syndrome (FIRES) on 8 May 2021.

His mother Rachel Liew, 54, will be joined by family, friends and doctors for the scooter ride from Birmingham to their family home in Mickleover on 20 September.

The challenge aims to raise £50,000 for a charity she is in the process of setting up, called Sam's Superheroes.

The 44-mile (70km) challenge will start at Aston University, home of the UK's first and only FIRES research centre.

It is scheduled to take place over three days with overnight stops in Lichfield and Burton in Staffordshire.

More than 40 people, including Sam's 85-year-old grandma and doctors from Great Ormond Street Hospital, have agreed to take part so far, Ms Liew said.

And she will complete the ride while carrying her son's red scooter on her back, "ensuring he is still part of the team".

"Anyone that knew Sam knew about his little red scooter," said Ms Liew.

"We saw a man who climbed a mountain with a fridge on his back to raise some money, so I thought 'what can we do?'.

"I wanted the challenge to include Sam and thought why don’t we scoot somewhere whilst carrying his scooter on my back."

Ms Liew hopes Sam's friends and other supporters will join the group for the "emotional" final miles.

Recalling the day when her son was taken to hospital, she told BBC Radio Derby that Sam was a "healthy boy" before he had his very first seizure, which lasted 35 minutes.

Sam then had more "catastrophic seizures" at Nottingham's Queen's Medical Centre before put into an induced coma.

Doctors diagnosed Sam with FIRES three days after his first seizure. He died seven weeks later.

Epilepsy Foundation describes FIRES as a "rare, sudden-onset chronic epilepsy syndrome that affects previously healthy children after a brief, nonspecific febrile illness, such as a cold or flu".

"I can't begin to describe the level of terror and fear," said Ms Liew.

"It was like nothing I had ever experienced before and it was just horrendous.

"It is every parent's worst nightmare."

Ms Liew said the condition was "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," said Ms Liew.

Dr Marios Kaliakatsos, a consultant neurologist at Great Ormond Street Hospital, in London, said he hoped money could be raised for further research into FIRES.

He said: "Let's make Sam one of the last children to lose their life or childhood due to this devastating disease."

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