'I had tea with The Queen' Brave Arlesey boy, 4, joins royal Christmas party

Zeb Day, 4, visited Clarence House for the festive fun, and enjoyed scrumptious treats, gifts from Santa, tree decorating and even a chance to sit with Her Majesty in the royal sleigh.

He travelled to London from his Arlesey home with dad Michael and their Roald Dahl Nurse Sarah Warmington, who specialises in children with medical complexities at Lister Hospital, part of East and North Hertfordshire Teaching NHS Trust.

The Queen is the Royal Patron of Roald Dahl's Marvellous Children's Charity, which is on a mission to make sure every seriously ill child like Zeb has a Roald Dahl Nurse to help them and their parents or carers navigate complicated healthcare journeys while caring for the serious illnesses at home.

For Zeb that’s a genetic condition called Cat Eye Syndrome.

He was born with his heart the wrong way round and with three holes – and had to have surgery for major heart reconstruction, which doctors think will impact on his longterm learning.

And just days later a brain haemorrhage meant brain surgery. The haemorrhage damaged his balance and coordination and his ability to swallow, meaning he is now fed through a tube straight into his stomach.

He gets care from several specialist teams for his conditions and has physiotherapy and speech and language therapy, both at Lister Hospital in Hertfordshire and Great Ormond Street Hospital in London.

But despite all this, the brave youngster has defied expectations. He speaks, signs and walks independently whenever he can, using a frame or pushchair only when tired or unwell, and started school this year.

His parents say he treats every day like a new adventure.

"It's like he is doing everything once and wants to make the most of it. He loves to explore, loves to meet new people. So can you imagine his excitement about a trip to visit The Queen?" said mum Jordan. "For a while he couldn't quite get his head around that being possible. He was just focused on going to the Queen’s house.

Dad Michael added: “Zeb amazes us how he takes everything in his stride, although he is starting to become aware now he's at school that this life he lives is different from the life lived by other children.

"When he’s in hospital he’s asking whether he can go back to school straight after the treatment. Or asking the doctor if he treats other children at his school, and if they come into the hospital, too. He’s started to anticipate the pain he suffers, asking if things are going to hurt, even though it’s hard for him to understand why.”

The family have had the support of a Roald Dahl Nurse since Zeb was six months old and say the difference to the whole family is massive.

"Our Roald Dahl Nurses – Eleanor and Sarah share this role – are on call if we are worried about anything to do with Zeb's condition, and they coordinate his medical care in a way that takes a huge weight off our shoulders and makes a real difference to him,” says Michael.

“They’ve signposted support services Roald Dahl’s Marvellous Children’s Charity offers, and introduced us to a complex care Zoom group so we can talk to other families. It's so helpful knowing you're not the only family going through something like this and listening to the way others have dealt with problems similar to those we're facing.

“We feel so privileged Zeb was part of this celebration, and that The Queen is meeting him and other children and helping them feel seen and understood," adds Jordan. "And while The Queen is doing that, the event is helping raise awareness of the complex medical needs so many children have and Roald Dahl Nurses like Sarah who make such a transformational difference to their life."

Louise Griew, chief executive of Roald Dahl's Marvellous Children's Charity, said: "It was a beautiful event and such tremendous care and hard work has gone in to celebrating the Roald Dahl Nurses and the work they do, giving the families the warmest welcome and making it really special for the children.

"We are so proud to have Her Majesty's support as our Royal Patron and for her warmth and welcome today. It was wonderful."