Moments that matter
This week’s Children’s Hospice Week, run by UK charity Together for Short Lives, is the only week in the year dedicated to raising awareness and funds for the 49,000 children across the UK living with life-limiting conditions, and the lifeline services that support them.
This year, the campaign focuses on how children’s hospices help create ‘moments that matter’ for the families they support.
For Hayley (pictured), having support from Julia’s House Children’s Hospice means that she has the peace of mind knowing that her son Jack is looked after, while she spends quality time with her eight-year-old daughter, Evie. Today, she has kindly agreed to share her story.
‘Jack has cerebral palsy and has always had seizures every couple of weeks, but he started having one a week and the seizures were lasting longer and longer, it was so frightening,’ said Hayley.
‘Sometimes things got so bad I needed to get Jack to hospital in the middle of the night. I would have to wake Evie up, get her out of bed and take her to the neighbours. Evie would go downstairs and open the door ready for the ambulance. It felt awful to think that it had become a normal part of life for her.
‘Evie doesn’t make a fuss, she just carries on and never says anything about what’s going on, or how she’s feeling. Sometimes when things have been tough she will ask for a cuddle and you realise just how much this is impacting on her.
‘One day, a Julia’s House nurse and carer came to be with Jack so that I could take Evie to a theatre club. To be able to go somewhere with her mum seems such a tiny everyday thing that other people take for granted, but it meant the world to Evie.
‘When you have a child like Jack it’s hard to find anyone who will look after him. Unsurprisingly, people are too scared, they don’t want the responsibility. It is such a relief to have the support of people who know what to do if there is an emergency and can stay calm.
‘Before Julia’s House there was just a void. It feels so wonderful to have the help we so desperately needed; it feels like the beginning of everything.’
If you would like to find out more about Together for Short Lives and their campaign, #ChildrensHospiceWeek, please visit: www.togetherforshortlives.org.uk/childrenshospiceweek.
