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“The thought alone of my daughter needing 'Hospice services' was just heartbreaking. I thought it would be really clinical, end-of-life-type care, and I was worried sick about handing her over to someone else, even if it meant I would be getting a rest.” 

Florence’s severe genetic disorder means that she experiences severe issues with neurodevelopmental delay, movement disorders and feeding problems – she alternates between eating orally and being peg-fed. Florence previously had regular epileptic seizures, though these have now largely abated since 2019, although they can still be triggered by issues such as changes in her medicine.

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Florence is one of four young children to Claudy-based Jennifer and her husband Robert, along with Florence’s older brother Oliver (eight), six-year-old Vivian, and Neve (eighteen months).  

Jennifer continues: “I vividly remember the arrival of our first stay at Hospice, back in 2019, and the smile on my two older kids, Oliver and Vivian, running crazy in this brightly coloured, huge room with all the nurses making a fuss over them. Florence had a big, beautiful bedroom all to herself, with all the equipment she needed on-hand. From the family bedrooms to the toys and unlimited snacks, we truly had a great relaxing stay!  

“We even got a chance to get into the pool together and Florence enjoyed it that much she even fell asleep!  

“We've been fortunate enough to stay several times since that first visit and we always love looking forward to our next time there. 

“Florence loves anything sensory, so she really appreciates getting
outside for a walk in the Hospice gardens – whatever the weather! – as well as the sensory playroom, the warm waterbed and she just loves the music. 
 

The staff really put the effort in for Florence, the facilities are always ready in an instant, plus the one-to-one care that Florence receives is invaluable. The nurses always greet Florence so warmly with ‘We’ve been expecting you!’ and they have her name up on the board to welcome her. It’s great that she gets those positive moments of being the centre of attention, as a Little Star in her own right.

While Florence’s one-and-a-half-year-old sister Neve is still too young, older siblings Oliver and Vivian are already proving themselves to be worthy Little Stars too, subtly helping their parents care for Florence.  

As mum Jennifer says, “Oliver and Vivian are really like wee carers too. They have such a strong bond between them. They know where Florence’s necessities are, they push her in her pram, and they can recognise her signs. They are also more understanding of us as parents and the challenges we face – they appreciate that some activities are not a possibility when we’re out with Florence. 

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Having Florence as a sister has made them more compassionate and empathetic, without them even realising. They are more mature, without having lost their innocence. We see this when they visit Hospice and are mixing with the other children. They often ask direct but thoughtful questions, out of curiosity rather than judgement, questions that an adult would otherwise rather avoid. They often reveal their own worries about Florence and her future. 

The Hospice is such a special place, with very kind people. We live in Claudy, ten miles outside Derry, so we are a bit further away from Horizon House which isn’t easy for visits. But we love how care at Children’s Hospice is so collaborative – they work with you, they don’t dictate or talk down to you. They listen to what you as parents do and just copy that without judgement, giving you the option to dip in or dip out of care as much as you want.  

 

We are eternally grateful for our stays, and the fundraising and people who make that happen for us. It really does make all the difference to us as a family.

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