A teenager living with a rare genetic disorder took centre stage after cutting the ribbon at East Anglia’s Children’s Hospices’ (EACH) new shop in Norwich today.
Ben Harwood, who has Lowe syndrome, opened the store in Castle Street, supported by mum Bec and EACH colleagues Louise Bray and Kat Stewart.
The 18-year-old, from Taverham, has been receiving care for 13 years and benefitted from short breaks at The Nook, in Framingham Earl.
He enjoyed the last of those this week and now transitions to adult hospice care, after celebrating his milestone birthday in June.
Bec said: “It warmed my heart to see him cut the ribbon, and I know he’ll be talking about this for a very long time!
“Everyone connected to this amazing charity should feel proud, and it was an incredible moment to step back and see so many people in the shop.
“The funds it generates will make such a difference to so many people.
“Even though we’re moving on, it makes me happy to think of all the children and families that will benefit in the same way we have.
“Ben might be transitioning, but our support will be lifelong, and we’ll always feel a deep connection with EACH.
“Being given this opportunity feels like a wonderful, magical culmination of everything that’s gone before.
“It’s the perfect send-off, and, as a family, we couldn’t wish for anything more or be more thankful.”
Ben was diagnosed with his condition after just eight weeks.
Lowe syndrome causes numerous other issues, including problems with his kidneys, and he underwent a transplant at London’s Great Ormond Street Hospital last October. Bec was his donor, but, unfortunately, the operation was unsuccessful.
Bec says she will never forget and always be thankful for the support her family has received from EACH.
“It’s been an enormous part of our journey, starting with ‘stay and play’ sessions and then progressing to overnight breaks,” she said.
“It’s something he’s always loved and adored, and he’s never been upset or disappointed when I tell him we’re off to The Nook. Just the opposite, in fact.
“It’s been an invaluable source of support for our family, and, along the way, we’ve met so many truly lovely people.
“The staff are incredible and go above and beyond every single time. Nothing’s too much trouble and that means the world.
“As a mum, it’s almost like there are two hurdles to overcome. First, at the beginning, you have to admit and accept the fact you need help and support.
“Then there’s the physical act of leaving your child with people you don’t know.
“Neither of those things are easy, but EACH always felt a perfect fit for Ben.
“It’s meant the world being able to leave him in a safe environment, and I’ve never ever felt judged or a burden.
“Nothing’s too much trouble, and everyone we’ve met has been wonderful.”
Shop manager Kim Jewell said it was a joy to meet Ben.
“It was an absolute pleasure to spend time with him and his family, and we’re so pleased they were able to join us on our big day,” she said.
“Ben did a fantastic job of cutting the ribbon, and we’re so excited to be up and running here in Castle Street.
“Our new shop is stunningly positioned, and, after much anticipation and lots of hard work getting everything ready, it feels great to be open for business. It’s a day I won’t forget for a long time.”
EACH’s new Castle Street store was the former home of The Body Shop, which had been open for more than 40 years before closing in January.
Anyone interested in volunteering there can pop in for chat or email Kim via [email protected]
Pictures: Karen Self/EACH
