A five-year-old who died in tragic circumstances will be remembered tomorrow (Sunday) at an Easter fair. Sam Liew died after the sudden onset of an epilepsy syndrome so rare it affects just one in a million people.
LancsLive reported the event is being organised by Sam's aunt Rhiannon Jones, the former headteacher of Kirkham and Wesham Primary School, in Nelson Street, Kirkham, near Preston. Held at Kirkham Community Centre, in Mill Street, from 1pm to 3pm, the fair will include cake and craft stalls as well as face painting and a raffle and all proceeds will go towards creating activity packs for children and distraction packs for teenagers being treated at Blackpool Victoria Hospital.
Sam died after developing febrile infection-related epilepsy syndrome (FIRES), which is believed to be an exceptionally rare reaction to a common virus such as a cold or flu. In was in March last year that he was rushed to hospital after experiencing the first of a series 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.
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 but 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 find out more about Sam’s Superheroes visit samssuperheroes.co.uk. To make a donation click here.
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