A courageous teenager with an extreme skin condition has died from sepsis – three days before Christmas. Rhys Williams, 18, was born with epidermolysis bullosa (EB) causing agonising sores over his body.
Rhys’ parents were told when he was a baby that he might not even make it to double figures – but he fought and fought to reach adulthood. He even planned his own funeral aged 13 so that when the day finally came, he’d be ready.
However, shortly after turning 18 in September, Rhys, from Bolton, developed sepsis and pneumonia. Doctors said there was nothing more they could do and Rhys’ treatment was stopped before he was moved to a hospice.
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He was moved home on Thursday (December 21) so he could spend Christmas at home with his parents and younger sister. He passed away the following day.
His mum and full-time carer, Tanya Moores, 40, said: “He was the bravest, strongest and most courageous boy ever. He was in pain day in, day out and never complained.”
Rhys was affected by EB – known as the ‘butterfly skin’ disease – from birth. Even a papercut could prove fatal if a wound became infected.
He went to school but needed constant supervision in case he came into any harm during his day-to-day activities, and would be in constant pain. Rhys began to deteriorate on November 4, and doctors thought he had Covid.
But he was diagnosed with sepsis, and pneumonia a few days later. Rhys’ health nosedived on November 14 when he stopped breathing because his lungs filled with fluid.
Barely able to move, he was moved to a hospice on end of life care in Chorley and on November 15, all treatment was stopped. His organs began to shut down – and yesterday (December 21) he was moved back home with his family to live out his final days comfortably.
In the early hours of Friday morning (December 22), he went to sleep and never woke up again. His loving family were nearby as he took his final breaths.
Tanya said: “I’ve been mentally preparing myself for this the day he was born but you can never truly be prepared.”
Rhys wrote his own funeral plan shortly before he turned 14, because he knew he may not make it much longer. Now, the heartbroken family have to begin making the arrangements for the day they knew would one day come.
Tanya said: “He sat and told me what he wanted for his funeral. He wanted everyone to wear red because he’s a massive Liverpool FC fan, except red Manchester United shirts aren’t allowed.
“He wanted to go to a big church to get everybody in and he wanted to go past the fire station on his final journey too. He wanted everyone to release butterflies at the service.”
Tanya said Rhys’ chosen funeral director has been on board since he made the plans in 2019. The family are now fundraising to help cover the costs of the funeral and have set up a GoFundMe.
They also asked if flowers could to be sent to their home to ‘cheer up’ Rhys’ heartbroken younger sister, Teegan, 11. Tanya added: “I don’t think it has hit us yet. But I am so proud, he was a fighter to the end.”
William Turner is a seasoned U.K. correspondent with a deep understanding of domestic affairs. With a passion for British politics and culture, he provides insightful analysis and comprehensive coverage of events within the United Kingdom.
