Wednesday, 12 June 2024
UK Charity Week 2024 - Sponsored by Sinclair Method UK
Wednesday, 12 June 2024

Mum shares her son’s story to inspire research into rare syndrome

THE mum of a little boy who died from a one-in-a-million epilepsy syndrome is sharing her son’s story with some of the world’s leading neurologists and researchers at a conference in London.

Rachel Liew’s son Sam was a healthy five-year-old when he developed 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.

Despite no history of seizures, the Silverhill Primary School pupil was rushed to hospital after experiencing the first of a series of increasingly debilitating and ultimately catastrophic fits. He died just seven weeks later.

Rachel launched a charity in memory of her little boy called Sam’s Superheroes, which has Sam firmly at the heart of it. They fund animal-assisted and creative therapies for young people together with funding and creating awareness of FIRES research and supporting families whose lives are impacted by FIRES.

Now she has been invited to share Sam’s story at an event being staged by The Epilepsy Research Institute and Young Epilepsy which will be attended by some of the world’s leading researchers and clinicians.

The Promise of Research event will be held at The Francis Crick Institute on May 21 and features presentations on cutting-edge projects and inspiring talks.

Rachel said:

“It is absolutely paramount that more research is carried out into FIRES so that this horrific syndrome can be successfully treated in the future.

“While it is incredibly daunting to get up on stage and speak in front of so many experts, I hope Sam’s story will show why research into this catastrophic and cruel syndrome is so badly needed. The impacts of FIRES are simply devasting and far-reaching.

“Further research will increase understanding of the causes and discover effective treatments that will prevent it from devasting so many children’s lives. Whilst we could not save Sam, we can finally start to provide hope for other children and families.”

The Epilepsy Research Institute serves as the central hub for the epilepsy research community and its mission is to radically advance research for the 1 in 100 people living with the condition.

The Institute aims to increase understanding of the causes and mechanisms of epilepsies and associated conditions to accelerate research innovations in prevention and treatment.

It actively involves people affected by epilepsy to shape how research is designed and delivered.

Epilepsy Research Institute Chief Executive, Rosemarie Pardington, said:

“Sam’s story is exceptionally moving and inspiring, and one that needs to be heard. We’re incredibly grateful to Rachel for sharing it at our ‘Promise of Research’ Reception, jointly hosted with Young Epilepsy.

“The Epilepsy Research Institute is proud to be supporting research into FIRES, which aims to increase understanding and inform clinical management. But more research is urgently needed so that we can prevent this devasting condition affecting more children’s lives.”

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