Jack's mum Hayley talks about his condition, and the effect it has had on his sister Evie, as well as the difference Julia's House has made to them all...
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. I began bracing myself for the next big seizure – they were like marathons, each one could go on for up to four hours and only really strong medication –that would knock him out – could stop them.
Sometimes things got so bad I needed to get Jack to hospital in the middle of the night. I would have to wake up Evie, get her out of bed and take her to the neighbour’s.
Evie would go downstairs and open the door ready for the ambulance. It felt awful to think that had become a normal part of life for her. I was really worried about the effect all this was having on her.
She is such an accommodating child, she doesn’t make a fuss, she just carries on and never says anything about what’s going on, or how she is feeling. Sometimes when things have been tough she will ask for a cuddle and you realise just how much this is impacting on her.
I asked for help but just kept getting turned down and then a social worker said I should try Julia’s House. I hadn’t heard about Julia’s House before but when I did I was so excited. It was absolutely everything we needed, so I decided to refer Jack myself.
Our first session was in December on a Monday evening at our home. A Julia’s House nurse and carer came to be with Jack so that I could take Evie to a theatre club.
Evie has missed out on so much, to be able to go somewhere with her mum seems such a little tiny everyday thing that other people take for granted, but it meant the world to Evie.
We haven’t been with the service long but I already feel really supported.
It is such a relief to have the support of nurses and carers who are not fazed by anything. Jack is in capable hands, in the hands of people who know what to do if there is an emergency and can stay calm.
But it isn’t just medical help – Jack has such a wonderful time with nurse Jess, he adores her. He loves driving the cars at the hospice and floor play. He never stops smiling when he’s at Julia’s House.
I took Evie along to a siblings event – a miniature zoo came to the hospice which I knew she would enjoy – but she was so nervous and shy I wondered whether she would be Ok and was a bit anxious about leaving her.
When I came back to pick her up she was a different child – she was charging around shouting “I’ve made a friend!” She had met another little girl and they had instantly clicked and started chatting away – it was just fantastic.
We’ve all three of us felt the benefit of Julia’s House. It is just really nice having someone be nice to you, to know that people really care about you, care about all of us, not just Jack.
We're not by ourselves anymore. We feel surrounded by love. We have no family to help us but we have Julia’s House – they are our family now.