A year and a half ago Amber was walking and eating by herself.
Now she’s in a wheel chair 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. Last time she had a cold she lost the use of her left hand, a spell in hospital left her unable to walk.
Amber has a Leigh’s Syndrome – a rare neurometabolic disease caused by a DNA mutation that affects the central nervous system. It is slowly destroying her and any illness speeds up the process. Flu could leave her seriously ill or lead to death.
During her early years, Amber’s development was slow. She had a squint so we took her to see an eye doctor who told us her optic nerve was damaged and referred us to Southampton Hospital for an MRI scan. We got a phone call on April 14th – I will never forget that date – from the neurologist. She asked if we were sitting down and then told us the awful news: Amber would be lucky to make it to her seventh birthday.
We try to keep her away from anything that might make her ill, trying to keep her alive for just a little bit longer. In December and January we go into ‘shutdown’. We don’t leave the house unless we really have to. The risk of her catching a bug is just too great.
Despite all she has been through, Amber has a lovely, sunny personality – she is amazing. She is always smiling and happy. Although she struggles physically she is still learning new words all the time. Just before Christmas she learnt to say ‘mummy and daddy’ which was really special.
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.
They do painting and cooking with Amber – they even let her paint their faces, which she loves! She gets very excited when she knows they are coming to visit. We spend so much time at home we can feel very isolated so it’s lovely to see some friendly faces.
Amber absolutely adores her nurses. She gets a few hours of completely undivided attention, from people who are devoted to her. I can honestly say she would be distraught if there was no Julia’s House.