Boy died in his parents’ arms from rare epilepsy syndrome affecting one in a million people

A little boy who suddenly died after a rare onset of an epilepsy syndrome, which only affects one in a million people, is going to be remembered through fundraising by those closest to him.

Sam Liew will be given a special tribute on Sunday April 3, when his family hold an Easter fayre event in his memory.

The five-year-old became seriously unwell after developing a Febrile Infection Related Epilepsy Syndrome (FIRES), believed to be an exceptionally rare reaction to a run of the mill virus such as a cold or flu.

In was in March 2021 that Sam was rushed to hospital after experiencing the first of a serious of increasingly debilitating and ultimately catastrophic fits, according to Lancashire Live.

Auntie Rhiannon and mum Rachel with Sam when he was just days old

Prior to this, he had no history of seizures. Experts from around the world fought to save Sam’s life from him but just seven weeks later he died in his parents’ arms from him.

Sam Liew will be remembered during the event that is being organized by his aunt, Rhiannon Jones, the former headteacher of Kirkham and Wesham Primary School, in Nelson Street. Rhiannon held the position for almost a quarter of a century before retiring last year, after a 33-year teaching career.

Rhiannon and her sister Rachel, who now lives in Derby, have created a lasting legacy for Sam by setting up a charity in his name which will raise awareness of Childhood FIRES and fund activities based around his love of animals, nature, crafting and the outdoors .

The event this Sunday is being held at Kirkham Community Centre, in Mill Street, from 1pm to 3pm and will include cake and craft stalls, chocolate and bottle tombola’s as well as face painting and a raffle.

All proceeds from the fair will go towards creating activity packs for children and distraction packs for teenagers being treated in Blackpool Victoria Hospital.

Sam at the beach enjoying himself and making treasured memories with his family
Sam at the beach enjoying himself and making treasured memories with his family

Rhiannon said: “I vividly remember sitting in my car and crying tears of joy when I heard that Sam was born and had the pleasure of my first cuddle with Sam just three days later. We were so delighted to welcome Sam into the family and feel very privileged to have had him with us for five very precious years.

“He was such a very special little boy full of kindness, love and awe and wonder at the beauty of the world around him. His loss of him has left a gaping hole in all our lives. However, I know he would be so proud of all that his mummy and her team of ella are doing at Sam’s Superheroes.

“Although Sam lived in Derby he has spent many happy hours with his family here in Blackpool, and although Sunday’s event is very much a Sam’s Superheroes’ event – ​​with lots of superhero themed activities and crafts that he would have enjoyed – we felt it was important that all the money raised is donated locally.

“We hope that lots of Kirkham and Wesham families come out on Sunday to support us. There will be plenty of activities and it’s an important way for us to keep Sam’s memory alive.”

To find out more about Sam’s Superheroes visit where there is also information about FIRES and NORSE as well as links to specific organisations.

To make a donation click here.

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George Holan

George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.

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