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A mum whose son recently celebrated a milestone birthday has spoken with warmth and gratitude for the support her family received from East Anglia’s Children’s Hospices (EACH).
Ben Harwood, 18, has Lowe syndrome, which causes numerous other issues, including problems with his eyes, kidneys and brain.
He has been receiving care for 13 years and benefitted from short breaks at The Nook.
He recently enjoyed the last of those and now transitions to adult hospice care, after celebrating his big birthday in June.
Mum 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.”
Ben, who now uses his wheelchair to get around, was diagnosed with his condition after just eight weeks and underwent a kidney transplant at London’s Great Ormond Street Hospital last October.
Bec was his donor, but, unfortunately, the operation was unsuccessful, and he is now in end-stage kidney failure.
Meanwhile, Ben, from Taverham, recently took centre stage after cutting the ribbon at EACH’s new shop in Norwich.
He opened the store in Castle Street, supported by Bec and EACH colleagues Louise Bray and Kat Stewart.
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.”
Pictures: Karen Self/EACH
Published in August 2025
