Boy died in his parents’ arms from rare epilepsy syndrome affecting one in a million people

A little boy who suddenly died after a rare onset of an epilepsy syndrome, which only affects one in a million people, is going to be remembered through fundraising by those closest to him.

Sam Liew will be given a special tribute on Sunday April 3, when his family hold an Easter fayre event in his memory.

The five-year-old became seriously unwell after developing a 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.