Alice is being attacked by her own body but the drugs to help her can make life tougher
SKIPPING and bouncing on a Space Hopper in the playroom, five-year-old Alice looks the picture of health.
But Alice's appearance hides that she is suffering with end-stage liver disease, caused by an auto-immune disease. Her own immune system is attacking her liver.
Jo, Alice's mum, said: "We live every day as it comes now and we don't take anything for granted. Alice is very resilient but any little infection – like a cold or a sickness bug – can make her really poorly and mean we have to go into hospital.
"She's looking really well at the minute and all her medication is keeping everything under control.
"But there's no long-term prognosis for her, so we have to live for every day."
Jo and husband Matthew's lives changed last December, when Alice woke up in the night feeling sick and wobbly on her feet.
The whites of her eyes in the very corners had started to turn a little bit yellow but Jo, 37, and Matthew, 36, put it down to a bug.
Jo, a primary school teacher, said: "We put it down to the fact that she was a bit under the weather. She started school just a few months before and it was coming up to the end of term so she was really tired.
"But within 24 hours, the whites of her eyes were all yellow and she had become incredibly lethargic and slow.
"We took her straight to the doctors who referred her to the Royal Derby Hospital, telling us to take an overnight bag with us."
At the hospital, tests were carried out on Alice, with doctors initially thinking it was hepatitis A, which attacks the liver.
Liver function tests showed that there were abnormal chemicals in Alice's liver.
The level of chemicals, which in a healthy person is below 50, came back as 2,500 in Alice.
And they were told that an alcoholic's liver usually only hits around 800.
Jo said: "They did the test a couple of times because they assumed the first result was just a fluke reading.
"When the second one came back just the same, they started to panic.
"The doctors said they'd never seen it so high in such a little girl."
Alice stayed in the hospital while more tests were carried out on her to determine the problem.
Jo said: "She tested positive for glandular fever, which the doctors thought was attacking her liver. They also said this was the reason she was so lethargic.
"But at around 11pm that night, while tests were still being carried out, a liver specialist popped in to see us, just as she was leaving, because everyone was so worried about her.
"She didn't even examine Alice, she just took one look at her and knew she needed specialist treatment that they couldn't offer at Derby.
"Birmingham Children's Hospital is world-class in its children's liver treatment and research and we were transferred there.
"When we got there, they knew exactly what it was and said it was very acute liver disease – not too far away from failure."
The following 24 hours were crucial to Alice as her body was pumped full of steroids to try to stop her immune system attacking her liver.
She pulled through, but spent the next five weeks in hospital.
A biopsy of her liver tissue was attempted but it had become so small and shrunken that a sample could not be taken.
Jo said: "Because we can't get a biopsy, no one can tell us what the prognosis is.
"They know it's advanced liver disease but they can't tell us more than that.
"We have to take every day as it comes and deal with whatever life throws at us."
Having a transplant is an option for Alice but it is not the case that this will cure her liver disease.
Jo said: "Because the liver disease is caused by an auto-immune disease, her body will attack the new liver just like it is now.
"That means that we could be back in exactly the same place we are now, but with more tablets to make sure her body accepts the new organ.
"There would be no guarantee that it would work and it would be putting her through a massive, massive operation.
"We know that she will need one eventually, when her liver does fail completely, but we are waiting until it's a must.
"It's a waiting game and we're taking all the advice from the specialists at the hospital."
Alice came home for Christmas last year and spent it in Ockbrook with her family.
Since the start of 2012, Alice's condition has been stable, managed by steroids, and she has not had to have any overnight stays in hospital.
Jo said: "To start with, the steroid dose was so high for such a small little girl that they totally changed her and her personality.
"She became violent – kicking and punching me and her dad.
"I'd go into her room and her bookshelf would be on the floor with toys everywhere.
"She didn't know how to deal with what was going on and what they were doing to her – she was only four at the time."
Jo said the steroids altered how she looked too, making her retain water so her face seemed swollen.
She also grew hair all over her body – which upset Alice. Jo said: "We couldn't really explain to her what was happening, she was just too young, so we just tried to make her feel better and tell her it was okay."
The family have also learned that going to hospital is not always the best thing for Alice.
Jo said: "Even a cold can mean a trip to A&E and we used to rush her there at the first sign of any illness.
"But now we've learned what to do a little bit more. A&E can be the worst place for her because she needs to be put in isolation – she picks infections up so quickly.
"We call Birmingham directly now and get their advice on what we should do. They've been so great with us, so helpful throughout the whole experience."
Alice still has to have blood tests to check on her liver function but at the moment it is stable.
Jo said: "We take each day as it comes. It makes it difficult planning but we do things off the cuff and it's changed how we as a family look at life."
Alice has a little brother, Archie, three, and Jo spends a lot of time at home with them both.
"I reduced my hours at work to spend more time at home. Alice goes to school around 30% of the time – she can't cope with any more," she said.
"Every minute we get is spent jam-packed full of fun things. We go to the seaside and we enjoy the time we have together.
"Alice loves horse-riding and gymnastics and we do worry about her.
"Any injury or knock can be dangerous but we can't stop her doing things and living.
"We want to enjoy every second we have with her and we don't want it to be spent cooped up – life's too short.
"It's changed all our perspectives on life."
The Children's Liver Disease Foundation, Jo said, has been an amazing help to them through their experience.
Jo said: "They're the only charity out there focusing on liver disease in children.
"It's very rare and we turned to them with all the questions and problems we were facing.
"They have been amazing.
"We've been to conferences all over the country that they've organised and it's been great to talk to people in our situation and know that we are not alone.
"And we've been able to help others with our stories and how we have coped as a family through the worst times."