Fair date in Kirkham in memory of five year old superhero fan Sam

A former Fylde headteacher is organising a fundraising event in memory of her five-year-old nephew who died following the sudden onset of an epilepsy syndrome so rare it affects just one in a million people.

By Tony Durkin
Thursday, 31st March 2022, 3:45 pm

Rhiannon Jones was headteacher of Kirkham and Wesham Primary School for almost a quarter of a century before retiring last year, after a 33-year teaching career.

She is organising an Easter Fair on Sunday, April 3, to raise money in memory of her nephew Sam Liew, who died after developing 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.

Despite no history of seizures, Sam was rushed to hospital near his home in the East Midlands in March 2021 after experiencing the first of a series of increasingly debilitating and ultimately catastrophic fits.

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Experts from around the world fought to save Sam’s life but just seven weeks later, he died in his parents’ arms.

Rhiannon and her sister Rachel, Sam’s mum, who 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.

Sunday’s event, which is being held in Kirkham Community Centre, in Mill Street, between 1pm and 3pm, will include cake and craft stalls, chocolate and bottle tombolas as well as face painting and a raffle.

Sam as a baby with his mum Rachel and aunt Rhiannon Jones

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

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 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 are doing at Sam’s Superheroes.

“Although Sam lived in Derby he spent many happy hours with his family here in and around 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.

Headteacher Rhiannon Jones on her retirement from Kirkham and Wesham Primary School last year

“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.”

More about Sam’s Superheroes is at www.samssuperheroes.co.uk where there is also information about FIRES as well as links to specific organisations.

To make a donation visit the #Samssuperheroes page at JustGiving