“However, while we were awaiting the blood test results, Emily got a rash on her legs which did not disappear when I did the glass test. Given all her other symptoms, that was enough to make me take her to A& E where they did further blood tests. It turned out that the rash was due to her scratching herself because of the severe itch.” 

Emily’s anaemia was so severe that her iron levels were 50% less than 18 months previously, and doctors ordered further tests. “I felt that there must be an underlying cause, but I suspected it was her kidneys,” says Ashley. “She had been a premature baby and had had a few suspected UTIs. However, the scans revealed that it was her liver and spleen that were enlarged. That’s when the investigation began as to what was causing the inflammation.” 

Over the next six weeks, Emily underwent numerous tests including a liver biopsy and was given an iron infusion which sorted out the anaemia. And in January this year she was diagnosed with auto-immune liver disease.   

“Although it was a relief to finally know what was wrong with Emily, the initial side effects of the steroid treatment were horrible,” says Ashley. “She became very irritable and extremely emotional with mood swings. She is always hungry and has gained some weight with her face shape totally changing. She also has difficulty sleeping at night. 

“Having said all that, she has responded well to the treatment with her ALT levels down from over 1300 to 100 so I remain hopeful that things will settle down.”  

Once Emily had received a diagnosis, Ashley was keen to find out more: “I know we’re always told not to Google, but I was very careful, only researching either an NHS site or registered charity, as some of the stuff on Google would scare the life out you,” she says. 

“But what I found on the Children’s Liver Disease Foundation website helped me understand more about this chronic illness. The information packs I’ve now been sent have been amazing for school, grandparents, even for her siblings. It’s much easier to explain what’s going on when you have a pack with all the facts available, rather than constantly trying to remember and relay what’s going on. And then once everyone has the correct information about her condition, it’s much easier to explain about her treatments. 

“Fundraising for the charity and raising awareness of liver disease in children has now become really important to me. I would say to any parent that if your child displays symptoms that you know are not right then get it checked over. You can’t be too cautious.  

“No parent wants to see their child suffer but there is nothing I can do as a mum to cure this illness or change it. However, if I can help this charity to help others the way they helped me, then I know I’m doing something positive!” 

Of course our hope was that surgery would resolve the problem, so it was a huge shock when, after the operation when Eiréné  was in intensive care, the doctor asked us how long we had been aware of her liver condition. This was a child who was never ill, never off school, I couldn’t even remember her having a cold. I thought they must be mistaken but the doctor was adamant – they kept talking about liver disease, cirrhosis of the liver and that she needed a liver transplant. They even introduced us to the transplant co-ordinator and asked if we wanted to proceed with it there! 

This was a lot to take in and by now all we wanted to do was to get Eirene home. It did take a while getting her on her feet but after a nine day stay in hospital, and a further two weeks in Turkey, she was well enough to fly, and we got her home to Belfast. We had contacted our own GP from Turkey to let them know what was going on and I have to say they were amazing. When we got home, they had alerted our local hospital in Coleraine, who after blood tests confirmed what the Turkish doctors had said. They then contacted Belfast Royal Victoria Hospital who very quickly involved the specialist liver unit at Birmingham Children’s hospital under the care of Dr Gupte.  

 The past year has seen long hospital stays, numerous medical appointments and although it’s not yet confirmed, the doctors at Birmingham agree with those in Turkey that Eirene does most likely have auto-immune liver disease.   

What caused Eiréné the most distress initially was the prospect of not being able to ride her beloved pony, Poppy, as she has an enlarged spleen and there was a risk of falling off.  Eirene has loved horse riding since she was nine, so this was a real blow. She was relieved in February this year, to be told she could ride again, with appropriate protection. It’s been wonderful to see her back competing with the Route Hunt Pony Club. 

Thankfully over the past few months,  Eiréné has remained fit and well. A liver transplant is not yet on the cards and although she does have hospital appointments, we were lucky enough that her last trip to Birmingham coincided with the Horse of the Year show at the NEC which was a real treat! 

Of course, her diagnosis in those circumstances was a huge shock but we’re relieved now that she is getting the care that she needs. Despite everything she has been through and all she is facing; she remains super positive and doesn’t allow this illness to hold her back.  

 As Eiréné says, “As long as I can ride Poppy it will all be fine!”