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A talented artist has reminisced about the fun and friendships he enjoyed while receiving care from a leading children’s hospice.
Ben Everett, 22, has Duchenne Muscular Dystrophy (DMD) – a genetic disorder characterised by progressive muscle degeneration – and was supported by East Anglia’s Children’s Hospices (EACH).
He was a regular visitor to the charity’s former Quidenham base and also went to The Nook, shortly after it opened in November 2019.
He then transitioned to adult services but looks back with huge fondness when reflecting on the care he received during his childhood.
Ben and mum Vicky recently took a trip down memory lane when visiting The Nook and being reunited with EACH Clinical Nurse Specialists Kate Jay and Sarah Baylis.
“EACH helped and gave me an opportunity to meet other people with different conditions,” said Ben, who lives in Costessey.
“I made one particularly good friend that I’m still in touch with now.
“Although I was nervous to start with, I always had fun and have happy memories of EACH, especially meeting Norwich City footballers when they came in at Christmas.
“I used to love my short stays at the hospice. I enjoyed staying up late, having days out, using the hydro pool, making pizzas, playing archery and Christmas parties.
“We also went to Center Parcs, Banham Zoo, Dream Night at Colchester Zoo and got tickets to see Norwich at Carrow Road, as well as visiting EACH’s other hospices at The Treehouse and Milton.
“There were always good vibes and I wish I could sneak back now.”
Ben first started receiving care when he was ten and transitioned at the age of 18.
In addition to his own joyous memories, those eight years were also invaluable to Vicky.
“People think about hospices and only consider end of life, but we know it’s about so much more,” she said.
“Ben always enjoyed his short breaks and was able to pick activities and events based on his interests and personality.
“He joined a young persons’ group and an early memory is when one of the music therapists came into his junior school.
“Things developed from there and it meant a lot to me, being able to leave him somewhere I knew he was safe, happy and being looked after.
“I was able to relax, without having to panic, and could recharge my batteries.
“When it came to transitioning, there was a feeling of finality, because we’d built up such strong relationships.
“In a strange way, Covid probably eased the process because we had to stop using the hospice anyway, rather than the sadness of leaving for the last time.
“There’s nothing quite like it, for this stage of his life. Most daycare for people of his age is for those with severe learning difficulties, which he doesn’t have. However, he does need somewhere with facilities and accessibility.
“Of course, there’s support and we’re grateful for the help we get. Ben jokingly calls his carers his ‘PAs’ (personal assistants). However, nothing compares with the experiences he enjoyed at EACH.
“Adult hospices are very different and we know other children who have also transitioned. They and their families say similar things and also miss EACH.”
In addition to Duchenne Muscular Dystrophy, Ben also has Scoliosis, where the spine twists and curves to one side. He receives support via funding from the NHS’s Continued Health Care programme and recently started spending time at Norwich’s Priscilla Bacon Lodge hospice.
Despite these challenges, he has just finished studying art at City College Norwich and spent five years on a Creative Short Courses (Level Three) course.
He used it as a way to cope with his condition and sold some of his artwork at Café Bar Marzano, within The Forum, last Spring.
He had pieces on display – a mix of acrylic and foil transfer prints, including one combined with a screen print, based on a photo he took at Norwich Cathedral – and donated 50% of sales to EACH.
“I’m very proud of Ben,” said Vicky.
“He’s always so happy, regardless of what he may be going through, and we have lots of giggles together.
“Ben has so much to deal with and things have been tough recently, as he’s in more pain and has less strength. However, we get through it with his quick-witted sense of humour and laughter. He’s always smiling and continues to be an inspiration.”
