Amber's story

The slightest illness can be devastating for six-year-old Amber as her mum, Emma explains

Emma, mum to Amber, talks about how community hospice care is bringing joy into the life of a fragile little girl and some comfort to her family who are housebound in their struggle to keep her safe. 

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. 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. That's why we are so overprotective trying to keep her away from anything that might make her ill, trying to keep her alive for just a bit longer. 

I have become paranoid about keeping her safe. 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 don’t leave the house unless we really have to. The risk of her catching a bug is just too great.  

If we have a doctor’s appointment or need to go to hospital I am on high alert for a week afterwards looking for signs of illness in Amber.  If any one of us is ill that person stays away from Amber.

I am also obsessive about cleaning. I use Dettol or antibacterial wipes on everything that comes into the house. We get our food delivered and even that gets disinfected.

We didn’t discover what was wrong with Amber until she was three.  She was unable to walk until the age of two – her development was really slow. She had a squint so we took her to see an eye doctor who told us her optic nerve was damaged and wasn’t normal and referred us to Southampton Hospital. We thought it just meant she would need glasses.

Amber had an MRI scan and genetic tests and we went home and waited for the results. 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.

She also told us not to look up her condition on the internet – but of course you do. She didn’t want us to be scared by what we might read. The truth is no-one knows what the future holds for Amber. Her genetic mutations are so rare she is even part of a scientific study by an Oxford professor.

She is six now and we know she is living on borrowed time. Day to day you try to push this to the back of your mind but the reality is Amber won’t live a long life.

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 now - 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. I’m the nurse and he’s the housewife – we’re a unit, totally reliant on each other.

I sleep in the same room as Amber to keep an eye on her because her muscles are weak and she can get stuck in an awkward position which can hurt her.

Despite all she has been through, Amber has a lovely, sunny personality – she is amazing. She is always smiling and happy and just goes with the flow.

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.

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. He needs a lot of support too and it would be asking too much of family and friends to help with both children at the same time.

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. I can honestly say she would be distraught if there was no Julia’s House.

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.

Become a Julia's House Nurse

Anyone thinking of becoming a paediatric nurse or changing jobs should not be put off by the idea that Julia’s House is a scary place. Coping with the death of a child is the part of the job everyone focuses on and yet there is so, so much more to being a Julia’s House nurse.

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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.

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