Parents open their hearts to reveal how hospice helped them cope after their son was diagnosed with incurable condition
The parents of a two-year-old boy who died after being diagnosed with an incurable condition have opened their hearts to reveal how Acorns Children’s Hospice helped them cope during the "darkest time of their lives".
Tony and Zoe Atzori have shared their moving story as part of the charity’s summer campaign, the Acorns Dandelion Appeal, which aims to raise funds to support families like theirs through the unimaginable.
The campaign invites loved ones, friends and Acorns supporters to remember someone special by dedicating a beautiful, limited-edition dandelion in their memory.
Each dandelion will then be included in a special Garden of Wishes in a touching spectacle that will see hundreds of these stunning bespoke sculptures fill the garden at Acorns for the Three Counties in Worcester, before being carefully packaged and sent to supporters.
The charity also runs a hospice in Walstead Road, Walsall.
Zoe and Tony, of Boldmere in Sutton Coldfield, will be among those remembering someone loved and missed – their little boy Luca.
“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.”
Baby Luca Atzori was just 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 is currently 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 with did with Luca because we literally packed a lifetime of stuff into a year,” Zoe said.
“Because we knew that it wasn’t going to be that long. I’m so glad we did that.”
Zoe and Tony welcomed their second child Luca on November 11, 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, who was nine-months-old at the time, was picked up by his aunt and she instinctively knew there was "something wrong".
As soon as they got home, Luca suffered a prolonged seizure and was taken to hospital.
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 straight away", Zoe said.
“We remember every single second of that day – our lives changed forever. I would have given an arm to change it.
“You have hope, don’t you? That’s what keeps people going. But I could just tell by her face.
"I remember saying ‘is there anything we can do?’ like, can I give him a liver or anything and she was like ‘literally nothing, nothing at all’. It was a death sentence.”
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.
“I just remember being really overwhelmed by everything. 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 and made loads of memories.”
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.
“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.”
Zoe and Tony went on to have another daughter Fran.
They talk about Luca openly now to both their daughters.
They treasure the memories they made together, and the keepsakes Acorns helped them create, such as Luca’s tiny footprints and handprints.
“I think if people understood what Acorns is really about,” Zoe said, “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 for a very short time.”
Acorns Children’s Hospice provides specialist palliative care for life-limited and life-threatened children and support for their families from its three hospices, based in Walsall, Birmingham and Worcester, and in the community.
In the past year, the charity has cared for more than 700 children and supported almost 1,000 families, including those who have lost a child.
People can support Acorns Dandelion Appeal by visiting acorns.org.uk/acornsdandelion
For a suggested donation of £25, you can own one of Acorns' limited-edition dandelions and dedicate it to someone you love.
