Luca Atzori’s story
11th August 2023
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.
“We will always try and do our little bit to help,” Tony said. “We’re eternally grateful for all the support we were given at Acorns. They helped us in our darkest moment.”
Tay Sachs disease
Zoe and Tony welcomed their second child Luca on 11 November 2010. It was a ‘lovely surprise’ to have a boy after having daughter Ella.
But it was during a trip to see Tony’s family in Sardinia when Luca was just nine months old that his aunt picked him up and instinctively knew there was ‘something wrong’.
“She said, ‘oh you know, he doesn’t feel that strong’. Luca never sat up and she said at his age he should be holding his back straight. She told us to take him straight to the doctors when we got home to England. She had that instinct,” Tony said.
It was just a day after they got home that Luca suffered a prolonged seizure and was taken to hospital. A child infection was initially thought to be the cause, and he was discharged home but when Luca suffered a second seizure he was re-admitted.
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.
“We had a community nurse come and see us. I just remember being really overwhelmed by everything. It took a while to get our heads around it. And then we thought, you know what, we need to just kick the hell out of life for him. So, we made loads of plans, did loads of stuff and made loads of memories.”
Support from Acorns
Acorns in Birmingham was not at all how Zoe and Tony imagined it to be. Instead, it was ‘really homely and child friendly’. The family went on excursions with Acorns and took part in many family, memory-making activities.
As Luca’s health deteriorated, a community nurse suggested the family should come to stay at Acorns.
“No-one ever said that that was it,” Zoe said. “You know, that was going to be the end of his life, and it never felt like that. I remember in the middle of the night, they were tending to him and we were on a sofa bed. And they said, ‘why don’t you get him into bed with you’.
“I’m really grateful they did that, I really am, and I can’t thank them enough for just gently telling us without us realising, saying ‘this is it, hold him tight’. We were with him when he took his last breath. He died in our arms.”
The family stayed at Acorns for a week after Luca died, while our specialist Nurses and Family Practitioners ‘thought about all the stuff they didn’t want to’.
Zoe said: “Luca was in the special bedroom for a week. It gives you the chance to say goodbye. I remember putting him in a cute little outfit and reading to him every night for that week.
“When you’re delivered a diagnosis, you don’t think that you’re going to have to plan your child’s funeral, but we did, and Acorns helped.”
Acorns helped them to choose a Peter Pan coffin too, a theme Zoe and Tony liked because he was the ‘boy who never grew up’.
Zoe said: “Acorns gave us a Memory Box. We took a lock of Luca’s hair, did some footprints and handprints. Looking at these keepsakes now it feels warm and fuzzy. All the pictures and all these things have happy things attached to them.”
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.”
Help support us
Hundreds of local babies, children and young people rely on Acorns Children’s Hospice for specialist 24-hour care and support. In turn, Acorns relies on people like you to fund the majority of our services. Your support with any charitable donation you can make is vital in helping us to continue the work that we do.
For more information or for interview, photograph or filming opportunities, contact the PR and Communications team at email@example.com.
Notes to editors:
Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.