A five-year-old boy died suddenly following the onset of an epilepsy syndrome. The condition is so rare it affects just one in a million people.
Sam Liew tragically passed away 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.
He will be remembered at an organised by his aunt, Rhiannon Jones, the former headteacher of Kirkham and Wesham Primary School, in Lancashire, on Sunday, April 3, LancsLive reports.
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In was in March last year that Sam was rushed to hospital after experiencing the first of a serious of increasingly debilitating and ultimately catastrophic fits.
Prior to this, he had no history of seizures. 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, 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.
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 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 samssuperheroes.co.uk where there is also information about FIRES and NORSE as well as links to specific organisations.
To make a donation click here.
