Isla is three years old, and she was born very premature at just 24 weeks.
“When she was born, she weighed just 517 grams,” says mum Georgia. “She was so tiny, she fitted into the palm of James’ hand.”
Since then, Isla has spent a lot of her little life in hospital. As a result of being born so early, she’s developed lung disease, brain damage and had heart surgery at just nine -months -old. 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.
This makes life extremely challenging for their family. Simple pleasures, such as going out to enjoy a sunny summer’s day isn’t always possible. For families like Isla’s, caring for a seriously ill child can often be worrying and isolating.
This is why Julia’s House is there for families like theirs, thanks to the generosity of supporters like you who can help to bring the joys of summer safely to our Julia’s House families!
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.
Isla’s mum and dad are so thankful, not only for the expert respite care their Julia’s House nurse, Amy, gives them at their home and at the hospice sessions, but also for the amazing family support that Julia’s House puts in place for her sister Darcey and the whole family - so that they feel cared for and supported through the most challenging of times.
Georgia says, “We came to the Julia’s House Family Garden party last year with the girls and my mum too. It was a lovely day, and Darcey especially loved it. There were people who wanted to do bubbles and music with her – everyone wanted to play. Isla loved the music man and the sensory tent as well.
“Over the summer, the extra respite sessions are also really helpful for me. I try to arrange it so that Darcey is in a holiday camp at nursery on the same day that Isla has a hospice session at Julia’s House. It means I can tick-off some jobs, or get my hair done, or walk the dog. Simple things that I wouldn’t be able to do otherwise because Isla needs to be watched constantly.”
She added, “It can be hard to chat to people when you have a child with complex care needs – because you’re so fixated on whether your child has their medicines, or their feeds running, or if they’re pulling on their oxygen tubes.
“When we go to the Julia’s House events, it’s a lovely opportunity to meet other families who know what you’re going through. Even though their child’s condition is different, they still understand the strains and stresses that you have when you’re caring round-the-clock for your very poorly child.”
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Julia's House has a CQC 'Outstanding' rating (Feb 2023), ranking us in the top quartile of all hospices in the UK. Click here to read the report.
