A Lifeboat with Sam’s Name: A Lasting Tribute in Wells

The name of a very special boy now sails with the crew of Wells Royal National Lifeboat Institution. Thanks to the RNLI, Sam’s name is engraved in the decals of the Shannon-class lifeboat, Duke of Edinburgh a moving tribute to loved ones whose legacies live on through lifesaving.

Remembering Sam

In May 2021, Sam tragically passed away after suddenly developing Febrile Infection-Related Epilepsy Syndrome (FIRES) an exceptionally rare and devastating form of epilepsy believed to be triggered by an abnormal immune reaction to a common virus.

The seizures caused by FIRES are relentless, life-threatening, and extremely difficult to control. There is currently no cure, and sadly, one in five children do not survive the acute phase. Those who do often face significant long-term neurological disabilities.

Sam had never experienced a seizure before. Within hours of falling ill, he was placed in an induced coma. Despite seven weeks of intensive care at Queen’s Medical Centre in Nottingham, the seizures caused irreversible brain damage, and Sam passed away on 8 May 2021.

Since losing Sam, his family have been working hard to raise awareness of FIRES a subtype of New-Onset Refractory Status Epilepticus (NORSE). They campaign for better understanding, more research, and the development of effective treatments—so that other families may be spared the same devastating loss.

A Special Connection to Wells

Wells holds a very special place in the hearts of Sam’s family. It was their last holiday together before he became unwell. During that visit, they watched the new lifeboat station being built and even asked one of the workers what the building would become. Today, Sam’s name forms part of the lifeboat that launches from that very site. A lasting and powerful connection to a place he loved.

Yesterday was an incredibly special day for the family. They visited Wells RNLI Lifeboat Station to see something truly moving: Sam’s name proudly displayed on the state-of-the-art Shannon-class lifeboat.

Thanks to the kind support of Jess Curtis from the RNLI press team, they were able to see Sam’s name sitting within the ‘R’ of the RNLI 13-46 numbering on the hull, alongside over 15,000 other loved ones.

This tribute couldn’t be more perfect. Every time they visited the coast, Sam loved lifeboat stations. On their 2020 trip to Wells, he had watched this very station being built. To now have his name on the lifeboat that launches from that same spot feels profoundly right. His name will be with the crew on every single launch. Sam would be so proud.

His mum, Rachel Liew, shared:

“In memory of Sam, we paint and hide stones around the world—we call it Love2Sam. Wells was his last ever holiday and he absolutely loved it. He thought RNLI volunteers were real superheroes, and it turns out he was one himself. Knowing his name is on the lifeboat means so much. Thank you to Wells RNLI for finding and re-hiding the stone—it brings us great comfort.”

The family also offered heartfelt thanks to Peter for a wonderful tour and to Jess for making the visit possible. As Rachel put it: “You’re both true superheroes.”

Honoured by the RNLI Tribute

The tribute has touched the RNLI crew deeply. Wells RNLI Volunteer Press Officer, Jess Curtis, said:

“We are deeply honoured to know Sam’s name is part of our lifeboat. Every single name in the decals tells a personal story with real meaning. To know the lifeboat brings comfort to his family, and that Wells holds such cherished memories for them, means so much to all of us. We are proud to launch in Sam’s memory.”

Sam’s name now lives on in every launch from Wells woven into the very lifeboat he once looked upon with awe.

It is a reminder not only of his life and love for the RNLI, but also of the enduring impact of memory, family, and community. His story continues through the vital work being done to shine a light on FIRES and NORSE.

How You Can Help

Your donation can drive groundbreaking research, offer animal-assisted therapy, deliver creative therapy toolkits to children in hospitals, and provide essential financial grants to families navigating life with FIRES (and NORSE).

Every contribution matters. Whether it's a one-time gift or ongoing support, you're helping us bring hope, care, and progress to those who need it most.

Join us in honouring Sam’s legacy. Together, we can make a real difference.

Every donation helps ensure that Sam’s story continues to make a difference.

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