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Jayden Everitt has a captivating smile that lights up every room he enters.
The 18-year-old was not expected to live beyond infancy after being diagnosed with semi-lobar holoprosencephaly – a rare condition affecting brain development – before birth.
Instead, he has defied the odds and recently transitioned into adult services after nearly two decades of care and support from East Anglia’s Children’s Hospices (EACH).
It marks the end of a chapter which has shaped not only his life but that of his family.
“He’s got the most wonderful smile and an aura that just draws people in, whether they know him or not,” said carer Linda, who, together with husband Steve, began fostering Jayden when he was nine months old and cared for him until he was ten, when they became legal guardians under a Special Guardianship Order.
“Even when we’re out and about, they’ll stop and have a chat because they’re so taken with Jayden. Everyone thinks the world of him.
“He enjoys being the centre of attention. He’s very sociable and, in the nicest way, has a knack of wrapping people around his little finger.
“Despite the challenges he’s faced, he’s always smiling. He’s strong, spirited and resilient and we’re both immensely proud.”
Linda and Steve’s children, Leanne and Martyn, along with their four grandchildren – Ryan, Tianna, Reuben and Olivia – have embraced him from the start and homelife has always revolved around Jayden.
“He’s always been a big part of our family, and it’s taken great teamwork and both of us working together to get him where he is,” said Linda, who spent three decades working with young people and adults with learning disabilities.
“He’s number one, and if he can’t do something, we don’t do it.
“We like to get out and about and push ourselves to do things with Jayden.
“We don’t like feeling restricted, and if we foresee any problems in terms of accessibility, we’ll always do our best to find a way round it.”
In addition to their strong family dynamic, Linda and Steve are hugely grateful for the role EACH has played in Jayden’s life.
He received respite care at the charity’s former Norfolk hospice at Quidenham, with the couple often staying alongside him.
Then, when Jayden grew older and started school, EACH adapted its support and members of the care team would travel out to the family home in Cromer.
They would stay for six-hour sessions once or twice a month, giving Linda and Steve time to recharge their batteries, spend time with family and friends or keep up with their commitments as members of the Cromer Carnival committee.
Although Jayden never stayed overnight at The Nook, they continued their relationship with EACH, attending events together or leaving him with the care team for a couple of hours while they popped into Norwich.
For Jayden, who uses a wheelchair and is non-verbal, art therapy became a particular favourite, while the whole family enjoyed taking part in online music therapy sessions.
“The care team have always been amazing, and they’ve helped him become the person he is today,” said Linda.
“They taught him things and did things with him that I couldn’t necessarily do at home.
“EACH has been a massive part of Jayden’s life, ever since he was a baby and we used to go to Quidenham.
“Having that support has made such a difference, especially in the early days when we needed extra help.
“In addition to the care team, we’ve met so many other lovely people and families.
“It’s been so helpful, and we’ve created a network with other families living nearby.”
Over the years, Linda has watched EACH grow and evolve, from its days at Quidenham to the opening of The Nook.
Now another significant change has arrived.
As Jayden moves into adult services, the family are navigating a future without the hospice that has supported them for almost 18 years.
“It’s been a huge step and very much the end of an era,” said Linda.
“Everything’s changed in terms of what’s available, and we feel like the rug’s been pulled from our feet.
“It makes me think of someone yanking a tablecloth and everything ending up in different places, given we now have to adjust and get used to a completely different way of life with little or no support.”
While looking forward, Linda reflects on the past with real fondness and has no doubt life would have been very different without EACH.
“It would have been a much lonelier experience,” she said.
“It would have been much harder, and I don’t know where we’d have been without it.
“It’s the physical support but also the reassurance – knowing there are people to fall back on and support you when you need picking up again.
“It’s meant so much, knowing they’re only a phone call away, and I consider the team there to be like extended family.
“We’ll always be so grateful.”
