A memorial event is to be held in Lancashire in honour of a five-year-old boy who died after suffering from a rare one-in-a-million epilepsy syndrome.Sam Liew, from Mickleover, Derby, died on 8 May 2021 after developing febrile infection-related epilepsy syndrome (FIRES).
His distraught parents, Rachel and Jim, watched on helplessly as neurologists fought to stop the seizures.Despite their best efforts and input from experts around the world, just seven weeks later Sam died in his parents' arms.
Sam's aunt, retired headteacher Rhiannon Jones, has organised an Easter Fair in Kirkham, Lancashire, to raise money for Sam's Superheroes.
The group, which hopes to become a charity, supports other children and families affected by FIRES.
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."His loss has left a gaping hole in all our lives. 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.”
The event will be held at Kirkham Community Centre, on Mill Street, Kirkham, from 1pm to 3pm on Sunday 3 April.
You can find out more on how to donate to Sam's Superheroes here.