Luca Atzori’s story

It was the darkest time of their lives, but with the help of Acorns, Tony and Zoe Atzori created a lifetime of memories with their little boy Luca, before he died peacefully asleep in their arms.

Baby Luca Atzori was less than a year old when he was diagnosed with Tay-Sachs disease, a rare inherited condition that stops the nerves from working properly and for which there currently is no cure.

He died in the arms of his mum Zoe and dad Tony aged just two while he slept peacefully at Acorns in Birmingham.

The couple say they will be forever grateful to the team of specialist Nurses and Family Practitioners at the hospice for supporting them throughout the ‘darkest time of their lives’.

“We’ve got such lovely memories of things we did with Luca because we literally packed a lifetime of stuff into a year,” Zoe and Tony said. “Because we knew that it wasn’t going to be that long. I’m so glad we did that.”

Zoe and Tony are among those remembering someone special this summer as part of our Acorns Dandelion Appeal. It gives loved ones, friends and charity supporters the opportunity to dedicate a beautiful, limited-edition Dandelion to help local children and their families.

Each Dandelion, will then be included in our special Garden of Wishes in a moving spectacle which will see hundreds of these stunning bespoke sculptures fill our garden at Acorns for the Three Counties in Worcester – all representing someone who is loved and missed.

It was first thought Luca had spinal muscular atrophy but after further tests, just three months after his first birthday, he was diagnosed with Tay Sachs disease, a rare and life limiting condition that mainly affects babies and young children.

The diagnosis came during an appointment with a genetic specialist who ‘knew straightaway’, Zoe said.

“We remember every single second of that day – our lives changed forever. I would have given an arm to change it.

That’s when Acorns stepped in.

Zoe said: “Acorns helps to make your experience as stress free as possible. But at the same time, subtly supporting you in navigating through difficult situations.

Zoe and Tony went on to have another daughter Fran. They talk about Luca openly now to both their daughters, and there are keepsakes in the house, such as a memory blanket made from Luca’s clothes and cushion covers too, along with the many photographs and Luca’s toy monkey.

“I think if people understood what Acorns is really about, and how it’s not scary at all, it might encourage more people to access the services. We have so many happy memories connected to Acorns. It was a big part of our life, even though it was a very short time.”