"Harry can’t understand us when we tell him we’re going to Demelza – but his little face just lights up when we show him his three favourite photos of his time there."
"Harry is one of our twins – and their first Christmas was spent in hospital. Both were born with lots of serious medical challenges. Thomas came home after a few weeks – but it was 16 months before Harry could come home.
He’s eight now and has to be fed by a tube every four to six hours. He’s very small (people don’t realise he and Thomas are twins). Harry is non-verbal and his way of interacting with us and the world is through pointing and gesturing – and through the photos he takes on his tablet. It goes with him everywhere. The images he takes are Harry’s memories – and his best memories are all from his trips to Demelza.
We first went to Demelza as a family before COVID-19. It was amazing. We played, had lunch; Harry and his brothers ran wild in the garden and the soft play room while their dad and me had a cup of tea, knowing they were all safe – with Harry in the care of an expert. We finished the day splashing around in their hydro pool together (that picture is one of Harry’s three favourites).
Since that first visit, Demelza has become a huge, huge part of all our lives. Harry loves it, goes running in through the door without a look behind (and he never wants to leave at the end of the day!). We use Harry’s Demelza days to focus on Thomas and their big brother James (who both so often miss out), to go out and do fun things Harry can’t manage, or just visit a favourite restaurant Harry wouldn’t enjoy.
Christmas has become the highlight of the year for us all. We don’t really know what the future will hold for us – and so we start earlier (and go bigger!) every year! Harry just loves all the lights and the sparkle. Christmas Day we have presents in the morning and a big traditional dinner (which I liquidise for Harry so he can have the same as us through his tube).
Two Christmases ago we were all locked down, of course, but Demelza’s Elves paid us a surprise visit – I’ll never forget the looks on the boys’ faces as ‘their’ elf came hopping up our driveway, arms full of presents for them. Last November, when Harry came into the hospice for his day, wearing his Christmas jumper, the nurses said, “Ooh great, you can help us decorate!”. They spent the whole day hanging decorations on the tree, putting the lights up. It was such a special day for him. He took so many photos and still sits looking at them most days.
We were all still having to be very careful then, so Demelza created a Grotto at the hospice and we all came along (in the rain, but we didn’t mind) and we walked round the brilliant Festive Light Trail in the garden – and then, the boys met Father Christmas. Harry’s eyes were so wide, his smile so big.
The truth is, you just don’t realise how crucial Demelza is to families until you need their help and care yourself. I’m an experienced nurse – but I’d struggle to cope if Demelza wasn’t there for us. That’s why we’ve been fundraising as a family for Demelza; not to ‘repay’ them – but to try and make sure they have the funds to open their doors to another family like ours this Christmas.
With that in mind, I’d like to ask if you could help them too; so Demelza can offer fun, laughter and care this Christmas to another child like Harry. I asked the nursing team and they told me that it costs £28 to keep Harry’s favourite hydro pool clean each day. An hour of specialist nursing care for a child over Christmas will cost £51. A series of art therapy session costs £360; keeping the soft play room open for an hour costs £72.
Any Christmas gift you can make will deliver incredible moments and special memories to a child like Harry, a family like ours, this Christmas. I really hope you’ll choose to support Demelza this Christmas.
From Harry, Thomas, James and me – thank you, so much. Have a wonderful Christmas."
- Juanita - Harry, Thomas, and James’ mum
Harry's story
"The truth is, you just don't realise how crucial Demelza is to families until you need their help and care yourself...I'd struggle to cope if Demelza wasn't there for us."
As part of our Festive Wishes Appeal, Harry's mum, Juanita, is sharing their family's experience at Demelza.