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William Davis, from Bury St Edmunds, who appeared on Channel 4 series Born to be Different, dies aged 24

William Davis whose life with a disability was watched by millions on TV has died aged 24.

William, who grew up in Bury St Edmunds, appeared on Channel 4 documentary series Born to be Different which followed his life, over 10 series, from six-months-old to the age of about 20.

He was born with Tuberous Sclerosis Complex (TSC), a disorder which caused mainly non-cancerous tumours to develop in different parts of his body. He also had autism.

William Davis with his family in Bury St Edmunds in 2013
William Davis with his family in Bury St Edmunds in 2013

With a prognosis that he would be lucky to live beyond the age of 10, he defied doctors’ expectations and in recent years gained some independence as he lived in a flat in Great Whelnetham with a 24-hour two to one care team.

He died at 3.53am today at St Nicholas Hospice Care.

His mum Paula, 52, said: “He really was a larger than life character and when he was well he was so happy.

William Davis with his family in Bury St Edmunds in 2011
William Davis with his family in Bury St Edmunds in 2011

“William didn’t stop with his enthusiasm for life. His nickname was captain chaos because wherever he went he left a path of chaos and people in a fit of laughter.

“He was cheeky and had amazing comic timing.”

Born to be Different chronicled the highs and lows of William’s life and offered hope to other families struggling with similar disabilities.

When William was two-years-old he underwent brain surgery and as he grew up his behaviour became more challenging and extreme.

William Davis with sibling Jessie
William Davis with sibling Jessie

It was thought to have been caused by more brain tumours and, aged 11, had major surgery for the second time.

When the last series was broadcast in 2020, it was revealed he had developed a life-threatening inoperable tumour on his kidney.

His friend Zoe who also featured on the show and with whom he shared an incredible bond visited him yesterday.

William Davis
William Davis

“When they (Born to be Different) first came to us, I said ‘no I hate cameras’ but then 10 years later (it was still going) – we were lucky to be part of the Born to be Different family and it was our extended family,” said Paula.

“It was mainly about helping people understand life with a severely disabled child.

“William being so well-known actually helped other people.

William Davis
William Davis

“There are good bits. It isn’t all doom and gloom. We often could do fun family things.”

She remembers him attending the opening ceremony of The Treehouse hospice in Ipswich with The Princess of Wales.

As the Royal left the event, William turned to his dad Nick and said to ‘she’s got a lovely bottom daddy’.

William Davis
William Davis

“She turns around and grins at him,” Paula said.

“He was a charmer. He’s going to leave a massive hole in our family.”

William lived his best life, she said, enjoying Dr Who, Harry Potter, gaming, Disney and Marvel.

He saw Mamma Mia! nine times at the cinema, liked pub lunches and enjoyed one last trip to Disneyland Paris in August.

His mum praised Mount Farm Surgery, the hospice and his care team from Avenues East who have been with him every step of the way to give him the best life possible.

Paula added: “He was the centre of our family. Everything revolved around William.

“Jessie was the best sibling ever to him. We were so proud to be his parents. If we had to do it all again I wouldn’t change a thing apart from to take away his suffering.

“He was such a massive personality and so much fun. He always had a way of making you laugh.

“He had a way about him that made everybody smile.”