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.

“Forever grateful”

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.

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.”