When she comes into the hospice, Isla loves nothing more than a nice long snooze on our play mats.
Mum Georgia says Isla never sleeps through the night at home, but when the two-year-old enjoys an overnight session at our Devizes hospice, her nurses say that she sleeps soundly until morning. Typical!
When she does stir from her sweet slumber, Isla’s favourite space in our hospice is the sensory room. She’s just learning to sit up without help and loves to practise her new skill, while discovering the rising bubbles and changing colours inside the bubble tube.
In this special room, we'll often cuddle up on the bean bags for story time, or help the children explore the lights, sounds and different surfaces at their own pace.
Isla was born very premature at just 24 weeks and has since spent a lot of her little life in hospital. As a result of being born so early, Isla's developed lung disease and other neurological conditions. She needs to be attached to oxygen to help her breathe, has to be tube fed through her tummy, and she may never walk or talk like her big sister Darcey.
Isla needs round-the-clock care for her complex needs, which makes her care sessions from Julia’s House absolutely vital for her mum and dad. With a few hours to themselves, they can spend quality time with Darcey, go for a walk, or just enjoy a coffee and catch-up. It's the simple things that can make the biggest difference.
Sometimes mum and dad will take part in the parent sessions that our family support team organise too, where they can learn a new skill or craft, and socialise with other parents who know what they're going through.
One of the things Isla really enjoys during her Julia’s House sessions is grabbing shiny objects and feeling new shapes and textures. The squish of paint between her fingers and making marks on paper is something that especially ignites her curiosity and makes her smile.
Her nurses and carers know that they need to get their aprons at the ready when it’s painting time with Isla! And once her hands are covered in paint, there’s nothing more fun than giving her nurses and carers high fives and playing pat-a-cake.
Just like Isla, all the children that we look after at Julia’s House are seriously ill. The majority need two nurses and carers to look after them for their complex and life-threatening care needs, but their parents often have to cope on their own while looking after their other children as well.
Together with your help, we can be there to support families like Isla’s, to give them a break, and to help them navigate all the clinical, emotional and financial challenges of looking after a very poorly child, who needs a lot of extra love, care and attention.
