“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.

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.