Tragedy as boy, 5, dies in parents' arms amid onset of rare condition

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