Luca’s story – shielding a vulnerable child from Covid-19

Luca’s mum Faye shares her families experience of the Covid-19 pandemic

Family shielding at home during coronavirus
Ben, Luca, Faye and Zach

This year the Covid-19 pandemic has impacted all our lives. It has meant we couldn’t be with our loved ones, leaving many of us feeling isolated and alone. For me and my family, these are feelings we are all too familiar with. You see, my five year old son Luca suffers from CHARGE syndrome, a life threatening condition, so even the smallest infection can be dangerous for him.

The ongoing threat of Covid-19 feels especially frightening for us, as Luca suffers from respiratory issues. It feels just as frightening as the beginning when Luca had his diagnosis. We were worried about him mixing with people and catching something. It feels very familiar to us again now.

We took Luca’s brother Zach out of school a little bit before the official lockdown because we just couldn’t take the risk. It was hard, I’d heard that Zach might not go back until September and the thought of him being pulled away from his friends and being isolated was tough. We’ve always tried hard to keep his routine as normal as possible, even when Luca’s in hospital so that it doesn’t impact on his future and his education. But it’s just not safe enough and he would be anxious and worried about Luca as well.

My family team worker from Acorns phoned me the other week and asked how Zach was doing. Obviously it’s quite hard to keep him entertained, Luca needs 24/7 care and is very cognitively delayed so he can’t just sit and play. Zach is amazing with Luca but it’s still really difficult for him. After that she sent some games and arts and crafts which was lovely, he’s definitely being thought of.

I miss going to Acorns. We didn’t use them for the first 18 months of Luca’s life and we were very lonely, very worried about the future and not having any support. Then, slowly but surely, Acorns became involved and we had somebody to talk to and other families who understood, that helped us a lot.

Child and mum in Acorns hydrotherapy pool

When we go to Acorns for Stay and Play it’s lovely because there are loads of activities for the children to do, but also I can sit and talk to other moms. I miss having a cup of tea with the staff and moms and having a good old chat about your week and they get it, they understand.

Normally we’d have a daycare at Acorns once a month, we’d go to Stay and Play two or three times a month and sometimes use the hydrotherapy pool as well. Then we’d have an outreach visit at home every two weeks. So Acorns is always there really. We’ve had regular phone calls from Acorns to check in on us and they also delivered some cleaning products and some snacks because I made a joke about Zach eating us out of house and home. I’ve never been so happy to see cleaning products!

At the next stage, when we’re moving on from lockdown, I think Acorns will really help us. I’m frightened about the next step but they said, ‘we’ll help you get there, we’ll help you get started and we’ll help you do the small steps moving forward’. Even if it’s just coming to an open space and enjoying the gardens with Zach and letting him have a good run around I know they’ll clean the equipment. The good thing with Acorns is I know how much they clean and I feel safe. Even before Covid I would trust that everywhere was thoroughly clean, Acorns will help me feel safer.

Acorns is life changing and so important to families like mine. I can’t imagine where we would be today without them. It’s so crucial for families like mine to have that support. Because without it we would be completely lost. I just wish we’d have come to Acorns sooner because we’ve never looked back and I’ve always been absolutely grateful for every bit of support, from me to Zach to Ben to Luca, we’ve all been massively supported and for us as a family we would be very different people if it wasn’t for their support.

Child at home

Luca’s mum

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