A year and a half ago Amber was walking and eating by herself. Now she’s in a wheelchair and has limited use of her arms.
Every time Amber is poorly she loses a little bit more of what she can do, we lose a little bit more of Amber – and that loss is permanent. Amber has a Leigh’s Syndrome which is slowly destroying her and any illness speeds up the process.
In December and January we go into ‘shutdown’. Amber’s 10-year-old brother Aaron has autism so he is home-schooled which makes it easier to protect ourselves. We keep her away from anything that might make her ill, trying to keep her alive for just a little bit longer.
We don’t leave the house unless we really have to because the risk of her catching a bug is just too great. I use antibacterial wipes on everything that comes into the house. We get our food delivered and even that gets disinfected.
We’ve been told Amber won’t lead a long life. She is six now and we know she is living on borrowed time.
It is hard being constantly exposed to things Amber used to be able to do but can’t now – like seeing a little girl walking down the street pushing her dollies in a pram. Amber used to love doing that.
Her fragile condition means we have to do everything for her - wash her, dress her, feed her. It has made us look at the world differently. My husband had to give up his job to support me.
When Amber was diagnosed we felt lost – our world turned upside down. A community nurse told us about Julia’s House. I don’t know what I expected from a children’s hospice, but I certainly never expected it to be such fun.
The nurses are fantastic. They just totally ‘get us’ and our quirkiness and adapt to whatever we need. They come to the house to look after Amber and give me the chance to spend some time with Aaron as he needs a lot of support too.
Amber is not very confident, but she absolutely adores her nurses. She gets a few hours of completely undivided attention, from people who are devoted to her. They do painting and cooking – they even let her paint their faces, which she loves! She gets very excited when she knows they are coming to visit. I can honestly say she would be distraught if there was no Julia’s House.