It was only when Yasin was called in for his routine eight-week mother and baby check with the GP that things really started to move forward. At that appointment, the GP examined him thoroughly from head to toe. Both she and I noticed that his skin was looking much more yellow than on some other days. She asked me how long he had been this yellow, and I told her that he had been that way for as long as I could remember. She then asked me about his feeding and sleep. His sleep was very difficult — he woke almost hourly to feed, and at night I wasn’t sleeping at all – I was completely exhausted. 

The GP decided it was best to send Yasin to the paediatric ward at the Royal London Hospital for blood tests. That was the first time anyone had referred him for blood work. At the Royal London, bloods were taken and the doctors initially said they wanted to rule out something called biliary atresia. He also had an ultrasound to check his liver, which they said looked completely normal at the time. I was told that they didn’t think it was serious. They did note his stools looked pale, but said they still needed to send his results to King’s College Hospital for review, given his high bilirubin levels and symptoms. After a few days, they discharged us, reassuring me that it didn’t seem like his liver was badly affected and that he wouldn’t need emergency surgery. At the time I didn’t really understand what was being explained, but I felt relieved to hear that he might not have a liver condition.  

However, just a few days later, I received a call from a registrar at King’s College Hospital, asking me to bring Yasin in for at least a two-day admission for further testing. I was very defensive at first — I told him I had two other children at home and couldn’t just suddenly go to another hospital I had never even heard of. But he urged me to make childcare arrangements and come in.  

At King’s, we stayed for several days. Yasin underwent many investigations, including multiple blood tests, another ultrasound, stool samples, and eventually a liver biopsy, which they explained was the gold-standard test for diagnosing biliary atresia. The biopsy showed changes suggesting he might have the condition, but the only way to know for sure was to proceed with a Kasai operation.  

 I was extremely stressed and frightened to learn that my tiny baby would need a major surgery lasting around seven hours. His Kasai procedure was performed on April 2nd 2024, when he was 10 weeks old. By then, I had already read about Kasai surgery and asked the doctors whether it was too late, as the success rates are often better if it is done earlier. They explained that there was no way to predict the outcome — a five-week-old might not have a successful result, while a ten-week-old might. There was no certainty, only the need to try.  

Before Yasin’s diagnosis, I had no idea that a baby could be born with liver disease. The only time I had heard of liver failure was in adults who had damaged their liver through alcohol, and I never imagined a baby could have this condition.  

 

After the Kasai surgery, Yasin still had jaundice, but it was much milder than before. The surgeons were pleased initially because his stools became pigmented, which indicated that bilirubin was draining properly. For a few weeks, he seemed to make progress. However, about four to six weeks later, I noticed that he started to look much more yellow again. His stools became consistently pale and clay-like, and he appeared even sicker than before the Kasai surgery.  

I contacted the liver CNS (Clinical Nurse Specialist) team at King’s College Hospital, who arranged for emergency blood tests at our local hospital. When the CNS nurse called me the following day, I immediately knew something was wrong, as they usually contact me by email. Yasin looked very thin, malnourished, and had a distended stomach. The nurse informed me that his liver function tests had worsened, and he needed to come in urgently for a liver review with the consultant at King’s College Hospital. I asked her if my son’s liver was failing. But she couldn’t give me an answer until we came in.  

At King’s, Yasin underwent an ultrasound and further blood tests. The ultrasound showed reverse blood flow and portal hypertension, confirming that he urgently needed assessment for a liver transplant. I broke down in front of the doctor, as although we had always known that Yasin might need a transplant at some point, we did not expect the Kasai surgery to fail so quickly, leaving him extremely unwell.  

The medical team informed us that he would need a transplant. However, he had to wait until the end of August 2024 for a full transplant assessment by the team, including surgeons, Professor Heaton (Head of Transplant), Professor Baker (lead consultant), and the transplant coordinator. Within minutes of meeting Professor Heaton, it was made clear that Yasin needed a liver urgently, ideally within the next three months. Being blood group B, which is rare, gave him priority on the waiting list, although there were still risks due to the shortage of organ donors. We were told that he was the only B group blood on the list at the time, but no organs had become available.  

Over the following months, Yasin’s condition worsened. In November 2024, he developed a portal vein thrombosis and required hospital admission at King’s for insertion of an insuflon and twice- daily dalteparin injections. I was trained to manage the injections at home, but he had multiple bleeding incidents, infections, and hospital admissions, including a serious episode of cholangitis that required two weeks of IV antibiotics. During this time, he was temporarily suspended from the transplant list due to his critical condition and weakened immune system but was re-listed once he had stabilised.  

Caring for Yasin became a full-time job.  Balancing the care of my other two children alongside Yasin’s intensive needs was extremely challenging. My husband, my parents, family and my in-laws provided essential support. I had been a primary school teacher for 13 years, but I resigned after Yasin’s diagnosis and transplant listing, as it became impossible to manage work alongside his care.  

By November 2024, realising the urgency of the situation, I decided to be tested as a potential living donor. Although my blood group is different from Yasin’s, I am an O group blood group and could donate to anyone, which put me in a strong position. After five months of thorough testing, by early January 2025, I was confirmed as a suitable donor. At that time, I remember researching on social media to find mothers like myself who had been living donors for their children and learning about what life was like after the procedure. I ended up speaking to a mother from America who had successfully donated her liver to her son. Hearing her experience helped me prepare mentally and emotionally.  

 I also reached out to other families who had been through similar experiences. Hearing their stories helped me feel less alone and gave me hope during a very challenging time.  

 

 

On April 16th both our surgeries took place. Yasin’s operation lasted 15 hours, and mine lasted seven hours and I feel very lucky that they were both a success. The surgical team that operated on both myself and Yasin were absolutely fantastic. They are superheroes. We were in the best hands possible, and we will forever be grateful for their skills, professionalism, and care.  

Yasin has had a few bumps in the road after his transplant, but overall he is doing amazingly well. He is thriving, looks healthy, has gained weight, and his bilirubin levels have returned to normal. His blood flow is functioning well, and most of his liver function tests are very good. He is bursting with energy. Before transplant, he wasn’t even able to sit confidently. After transplant, in the space of weeks, he started sitting, crawling and walking shortly after. He looks like any other healthy toddler now. I often get comments from people about his bubbly and confident personality and especially on how healthy he looks. It’s very heartwarming to see him thriving because of my liver. The surgeons described it as fitting the missing piece of a puzzle inside him.  

 

 

Of course, life after a transplant is a long journey, and he takes lifelong anti-rejection medication. The medical team has reassured us that eventually the dosage will be reduced, making things more manageable. Because his immune system is compromised, we are extremely mindful of Yasin’s health. He is far more sensitive than other children, so we have had to educate family and loved ones that if anyone is unwell, they cannot go near him. We also have to carefully consider any plans or outings we make, especially during the first year after his transplant, to ensure he is not exposed to infections or other health risks.  

 

 

My own recovery has been extremely challenging. Being a living donor to my son was by far the hardest thing I have ever done. Even though I have given birth to three children, this was a completely different level of difficulty. One of the hardest things was being separated from Yasin for the very first time. We were split between two different ICUs in two different wards while my husband cared for both of us. As his mother and primary carer, I had never been away from Yasin before, and that separation was incredibly tough. The recovery involved managing intense pain from a large vertical incision, limited mobility, and an inability to lift anything heavy, including my son. So, yes it was physically and emotionally intense, but it has given both Yasin and me a second chance at life and I feel privileged to have been able to do this for him.  

 

Our family life has been challenging, particularly for my two older children. They missed me greatly during my recovery, especially as both Yasin and I were in hospital. My husband took extended leave from work to care for us, and my parents, family and in-laws provided essential support with our other children. There were difficult moments, but with video calls and hospital visits, we managed to stay connected. Now, our children are happy, and our family is slowly getting back to normal.  

 

 

I know a lot of families will be heartbroken to hear that their child may need a liver transplant or that a Kasai procedure may fail, as it did for us. But this does not mean it is the end of their child’s life. We welcomed the idea of a transplant because we knew it would change his life for the better. While a transplant replaces the damaged liver, it is another journey and requires care, but it gives children a new lease of life. Families should know that children can go on to live very healthy, normal lives, grow up, and even have families of their own.  

Deciding to be my son’s living donor was not an overnight decision. It was a family decision. The transplant co-ordinator emphasised that it impacts the whole family — not just the donor and the child, but also the other children, the partner, and immediate family members. It is something that must be carefully considered and thought through. For us, it was the right decision, and I do not regret it. Seeing Yasin after the transplant, I would do it again. The scar I bear is a reminder of what I did to save my son’s life and something I will always be proud of. 

 

Knowing what I know now, my advice to other parents in relation to childhood liver disease is to trust your instincts. If you notice that your child’s stools are pale or chalky, or that their skin or eyes are unusually yellow, do not wait or accept reassurances that it is nothing to worry about. Seek immediate medical advice from a GP or hospital. Early recognition and intervention can make a huge difference in outcomes. I also feel strongly that there needs to be better education for healthcare professionals, especially midwives and NHS staff, about recognising early signs of liver disease in babies. Parents must advocate for their child, as early action can be life-saving.  

 More information on our Yellow Alert campaign to identify the signs of liver disease in newborns is here  .

 

 

Alpha-1 is a genetic disorder characterised by the need for two faulty genes, one from each parent. Due to the limited understanding of the condition at the time, I was invited to participate in additional tests at King’s College Hospital to support research. I even recall a researcher from King’s College Hospital visiting our family gathering to collect blood samples. During another visit, I was informed that I would likely require a liver transplant in the future. My mother remembers me expressing my determination not to undergo such a procedure.

After that, apart from six monthly hospital visits, life remained largely unchanged for me. However, due to my enlarged spleen, I was advised against participating in contact sports.

Similarly, during my university years, I felt no different from other students. However, following my doctor’s recommendation, I refrained from smoking and alcohol. Whenever people inquired about my reasons, I would simply explain. Honesty with others earned me their respect, and I never felt pressured to engage in drinking.

It was shortly after university that my only significant disappointment in life occurred. I had always aspired to join the Royal Air Force, but I was informed that I was ineligible due to my condition. Consequently, I decided to pursue a career in aircraft design and manufacturing.

 

In 2002, I relocated to Somerset to work for a helicopter manufacturer. It was here in Somerset that I met my future wife. We tied the knot in 2007, and I must admit, I indulged in a glass of champagne after the ceremony. Before starting our family, we requested that my wife undergo testing for alpha-1 antitrypsin deficiency. Fortunately, the results revealed that both of her associated genes were normal. We now have a son and a daughter, both of them are carriers of the condition with one faulty gene (similar to my parents).

In 2012, I visited Birmingham Hospital and met with a consultant there. The consultant informed me that my liver cirrhosis had progressed to the extent that I would require a liver transplant within the next five to ten years. A few years after this diagnosis, I developed ascites, a common side effect, and commenced medication to manage it. As the years passed, I began to experience further symptoms as my liver struggled, including yellowing of the skin and eyes, leg cramps, and temporary memory loss. After meeting with my consultant at the Bristol Royal Infirmary, I was referred for a transplant suitability assessment at the Royal Free Hospital in London. This assessment resulted in me being placed on the transplant list in July 2023.

We were informed that a call could come at any time, day or night, and that I would have to immediately leave everything behind and travel to London for surgery. After being placed on the list, I received three calls, each requiring me to leave my family and travel to London. However, on each occasion, while waiting to undergo surgery, I was informed that the potential donor was not suitable. This left me with a mix of emotions, not only for myself but also for the families who had lost loved ones. Nevertheless, I had to trust the medical staff’s judgment and believe that they were making the best decisions for my well-being.

On receiving my fourth call from the Royal Free Hospital last October, I embarked on another journey to London. This time, I was given the green light and underwent surgery at 9 pm that very night. I spent two weeks in the hospital, receiving exceptional care from the dedicated staff. I am deeply grateful for their support and excellent care.

 

During my stay, a research associate kindly collected samples to support their research into alpha-1 antitrypsin deficiency, and potentially find a future cure. Additionally, I had the privilege of meeting a few student doctors, providing them with valuable insights into the condition.

After my discharge, I made weekly visits to the consultant at the Royal Free Hospital for a month, after which I was referred back to my liver coordinator, Sarah, at the Bristol Royal Infirmary. Currently, I am taking six different types of medication. Although I still have alpha-1 antitrypsin deficiency, the liver transplant has effectively cured me of the effects of the condition. The symptoms that plagued me before the operation have vanished, and I am now on the path to recovery, pushing myself towards being able run 5 km again.

 

I would like to express my heartfelt gratitude to my donor’s family. I am incredibly thankful for their selfless decision to donate their loved one’s liver, giving me the chance to see my children grow up. I genuinely hope that my story serves as a source of inspiration and support for children with this condition, and their parents. My hope is that the research I have contributed to will eventually lead to a cure.

To anyone living with this condition, I strongly advise that you continue to live your life to the fullest and don’t let it hold you back.

 

“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!” 

 

 

Charlie had his Kasai on December 8th, all went well, and we flew back home to Northern Ireland a week later. I told myself that the operation would have cleared up all the problems, but I was so wrong. Charlie was in hospital every month with repeat episodes of cholangitis and an enlarged spleen. He underwent a transplant assessment at the end of February last year and was listed for a liver transplant on 8th March – a year ago now. 

Every day we pray that we get that call. Charlie continues to be in and out of hospital with cholangitis and had to have a central line put in as his vein access began to give trouble because of the cannulas for IV antibiotics. Despite this he is such a happy little boy, he loves to dance and play with his big sister Sophia and big brother Lewis. 

 

We are so grateful to the Blossom Ward at Craigavon Hospital. Charlie has such a good relationship with the nurses and doctors there. We also can’t thank Birmingham Children’s Hospital Ward 8 enough. They are absolutely brilliant at what they do and how quickly they act with treatment plans for Charlie. We’re very fortunate that Charlie’s consultant, Dr Gupte, flies over to Belfast for his clinic every few months which is a great help for us as it means we don’t have to leave Belfast to travel. He is an amazing man and we’re so thankful Charlie is under his care.  

Having a child with liver disease certainly affects the whole family and in the early days I did make the mistake of trying to deal with everything myself. Because the condition is rare, you do feel like you’re the only ones going through it. But with two other children this isn’t easy. My daughter is only five and currently just accepts that Charlie is sick and sometimes needs to go to hospital. But for my son, who has autism, the changes to his routine while Charlie is in hospital are much more difficult to cope with. I would certainly be lost without my close family support! 

 

Now, through the stories I’ve read on this website, I realise that there are many other families out there going through the same thing. This has been a comfort to me, and I’ve made some really good friends along the way! I talk to Niamh, who has also shared her story about her daughter, Croia, (pictured above with Charlie) and she has helped me deal with things a lot better.  

So I hope that sharing our story helps others in our situation and we remain hopeful that Charlie gets his new liver this year.  

 

 

 

 

After discharge, a visit to Birmingham Children’s Hospital confirmed that she had Orthnine Transcarbamsylase (OTC) deficiency which was to be managed with medication and a restricted protein diet.  It turned out that “OTC deficiency is a rare X-linked genetic disorder characterized by complete or partial lack of the enzyme ornithine transcarbamylase (OTC) and is one of six enzymes that play a role in the break down and removal of nitrogen the body, a process known as the urea cycle. The lack of the OTC enzyme results in excessive accumulation of nitrogen, in the form of ammonia (hyperammonemia), in the blood. Excess ammonia, which is a neurotoxin, travels to the central nervous system through the blood, resulting in the symptoms and physical findings associated with OTC deficiency. Symptoms include vomiting, refusal to eat, progressive lethargy, and coma.”  I also discovered that there was a risk of potential brain damage.   

Happily, the medication started to work along with the restricted protein diet which included low protein snacks and milk substitutes.  It did mean having to weigh out portions and calculate the protein content of each meal, but things did get better.  We had an emergency regimen in place as we learned that the developmental stage of illness would set off a metabolic episode every three months or so, resulting in a hospital admission, so we had a packed bag by the front door just in case.  

By the time Mahalia was five, the consultants in the Metabolic Team at Birmingham told me that she wasn’t progressing as they would have liked with the medications and the restricted diet and that for a better quality of life, they would suggest a liver transplant. She went on the list and her transplant took place in September of the following year when she was six. 

 

 

I can only describe events after that transplant as like being hit by a ten- ton truck.  Everything that could go wrong did.  It took a good 12 months for Mahalia’s new liver to settle down.  This is where her mental health issues started, from remembering the trauma she went through.  The liver plodded along for a few years and then Mahalia hit puberty and in 2015 she went into rejection which periodically happened over the years but this time nothing was improving.  She had jaundice but being of black Caribbean heritage we didn’t notice a yellow tone to her skin and by the time it started showing in her eyes she was in the grips of rejection.  Numerous deficiencies were occurring, vitamin K, potassium, steatorrhea (that was not pleasant), medication induced diabetes, vitamin D and her hair started falling out.   

In April the following year the Liver Team at Birmingham told me that without another transplant she had 12 months to live.  We were fortunate that she received her second transplant that August and this time things were very different.  The previous liver was a split liver.  This one was a whole liver, and it kicked in straight away.  I remember feeling guilty because she was the healthiest child on the liver ward. Since then, Mahalia’s physical health has been pretty good but the trauma she went through certainly had an impact on her mental health, particularly with the second transplant as she vividly remembered the difficulties with the first one.  

 

I’m a single parent and I have a fantastic support network who have basically held me up along this journey. As for Mahalia, attending CLDF’s Talk Tell Transform workshop was brilliant for her.  She was with other teenagers who had issues with their liver and had to take regular medications, and it made her feel less isolated.  

 Mahalia is now 21 and in her second year of a degree in music business. She loves singing, dancing to K-pop and she loves to talk and has very strong opinions!  And although life has always pretty much been just the two of us, she is now forming friends with other young people with similar interests to her, something which was more difficult at high school, but it’s good to see her developing a social life.   

 

I think most parents whose child has gone through a transplant would agree that it’s not a cure – it’s a different course of treatment, so don’t get complacent.  For us, five years post-transplant and we were practically back at stage one with Mahalia needing another transplant.  Things can change in an instant. 

 Sometimes it can be difficult to know how to support your child, particularly if you’re not feeling the greatest yourself but I would say keep talking. Mahalia and I talk a lot and even if it’s difficult to hear your child talk about the pain she is feeling, I’m glad that the channels of communication are open.  

 

 

 

I left the GP surgery in tears and when I got home, I rang the health visitor and insisted on a visit from her. She repeated the GP’s theory that I should be assessed for post-natal depression, but I insisted I was not depressed – there was something wrong with Ella. She was my second child, and I knew this was not how things should be. Thankfully at that point, the health visitor witnessed Ella projectile vomiting after a feed and sent us to the local hospital for a review. 

 We went straight to A&E and within minutes we were admitted to the children’s ward for tests – finally someone was taking us seriously! After days of various tests and scans Ella’s consultant sat us down and told us there may be a problem with her bowel which needed further investigation. Further tests confirmed that her liver was in trouble, and we were being transferred to a specialist unit. 

 Dr Barnard, Ella’s consultant in our local hospital, was nothing but amazing. He sat us down and explained everything and said we will be going to Birmingham Children’s hospital where they have an incredible success rate with liver transplants. We had just a couple of hours to arrange for our three- year- old daughter Lydia to be cared for by her grandparents and at 5pm, we started the long worrying journey to Birmingham with our baby blissfully unaware of anything that was happening. 

 The journey was horrendous – I just could not stop crying with sheer panic and worry. We arrived late at night with no real idea of what was going to happen.  The very next morning Ella was taken to theatre for a procedure to try and explain what was happening. The tests continued over several days and as Ella became weaker and weaker, it was decided she should be NG fed.  After 10 days we were told that her liver was diseased, but the cause was unknown.  We were discharged from Birmingham back to our local hospital in Clywd but every two weeks went back to Birmingham to see her consultant. 

  Fast forward two years with lots of hospital admissions, catching every bug going, severe itch, and distended abdomen, we went to a routine clinic appointment in April where Ella’s consultant was seriously concerned and made a phone call up to the ward asking when the next transplant assessment bed was available.  I clearly remember him saying ‘No – I need something sooner’. We were sent for some blood work and weight checks and when we were called back in, her consultant explained that Ella’s liver transplant would take place sooner rather than later. He said the way things are, she might not see Christmas. 

 As parents we just couldn’t think straight and felt numb … we were told to go home, and somebody would be in touch. Half-way home we had a phone call asking us to go back the following week for transplant assessment. So,k we returned that week for five days’ assessment and Ella underwent every single test known from head to toe. For us it was tiring and worrying but our little lady just smiled as she always did and never ever cried even when she was in the most awful pain with her huge, distended tummy and her severe itch (which nurses said was the worst they had seen!)  

 Ella had not had chicken pox, so she had to have the vaccine which put things back by two weeks but before the end of May 2008 she was finally listed for transplant. 

  It was just weeks later, just before midnight one evening when he had a call from Pete, the transplant co-ordinator, asking us how Ella was and if she had any sniffles. I remember thinking what a daft time to ring us asking these questions. The penny didn’t drop until he said ‘Well you best start making your way to Birmingham, we have a potential liver!’  

 At 1.15 am we wrapped our little girl up into her car seat all packed up and gave lots of kisses to her sister, who was once again in the care of her grandparents.  I felt absolutely awful leaving her, but Ella needed us, and we had to be strong for the next few days and weeks. We arrived at the hospital just after 3.30 am. I was scared stiff, cradling my baby tight in my arms, not wanting to let go of her! She was taken straight for bloods and a cannular insertion, numerous clinicians came to see us, and at 8.40 am it was all systems go. We took her into theatre… she looked SO small in that room with so many people and all that beeping, our little girl still smiling back at us totally oblivious of what was about to happen. 

 We kissed her on her head and left her with her dolly, lucky Lucy. She still has her to this day, and she is 19 years old now! Lucky Lucy has been in every theatre trip and hospital admission and believe me there have been a fair few!   

 We walked away sobbing with fear and worry and we were told to go and have some rest as we would need to be strong for when she was back in intensive care. It was seven hours before we heard that she was doing really well and that we should go to ITU for 7pm. The whole day was nothing more than a nightmare. We just stumbled around Birmingham city centre drinking endless cups of coffee peering into shop windows trying to take our minds off what was happening. 

 

 

At 7.40 pm our little girl, looking so small on a big bed, was wheeled in attached to a million and one loud noisy machines. It looked so scary, but we could see straight away that she was pink and not jaundiced and her tummy was flat.  Although I was scared to touch her with all the wires attached, and she was on a ventilator machine, I stroked her hair and kept saying how very brave she was and that she was going to be ok. After 12 hours, she was weaned off the ventilator and her recovery was going brilliantly until the ninth day when she had the dreaded bile leak! That was terrifying. She was rushed back into ITU looking so frail and was then taken into theatre where she was fitted with a bile bag and received a blood transfusion. Thankfully after four weeks with the bile bag and strong medications, the problem was resolved and after six weeks we were allowed to come home! 

 Throughout her childhood, Ella spent so much time in and out of hospital. She’s suffered with sepsis, ecoli, and every bug known to man. She even had to have her salivary glands removed but she remains a real trooper!   

 

As a family we are naturally passionate about raising funds and awareness of childhood liver disease and organ donation and some years after her transplant we met Lindsey, mum of Ella’s donor Jess (both pictured below).  We’re now all really close and Jess will always be our shining star, up above, forever 17 How two families became one thanks to a teenager’s amazing gift of life – North Wales Live

 

 

Despite everything Ella has been through and continues to go through -including having to be fed via a peg as she struggles to absorb nutrients from her food- Ella has never complained and continues to deal with whatever life throws at her. She is currently doing a foundation course, as she missed much of her last year of school through illness, and her ultimate goal is to be a paediatric nurse. 

 

 

We are incredibly proud of her and of course forever grateful to our shining star Jess and her wonderful family who gave Ella her second chance at life. 

 

 

We were informed that, like the toddler in the recent EastEnders story line, Idris had autoimmune hepatitis, something we knew nothing about.  So of course, when we all got back to the hotel room, miles away from home, around the corner from the hospital while Idris was sleeping, we turned to Google (other search engines are available!). 

 We couldn’t believe what we were reading. Life expectancy, life impacts, fatigue, the lists went on and on. Nothing positive. Our hearts sank, and the tears streamed from our eyes – we had no idea what life would hold for Idris, or even if he would live! In this very moment life was very dark, and we began to feel so angry. Why him?  It felt like our world had ended. We felt hopeless, lost and full of uncertainty.  

 This is where second chances prevail… 

  

 

We decided to get beneath the top line of the articles and get to grips with the disease and our new lives. We reached out to the British Liver Trust, Children’s Liver Disease Foundation and the Autoimmune Association, all of which have great insights and knowledge which we have been able to resourcefully use. We have even been able to impart our knowledge at our hospital appointments, which has influenced the care pathways that Idris has received. Also, a plug for an autoimmune hepatitis (AIH) Facebook Support group – which have always been there if we need some rapid support. Thank you!

We are extremely proud of our little boy. Despite the hospital appointments, daily medication, scans, blood tests (which at times have been daily), biopsy, bouts of isolation and many other challenges – he remains happy. Which, when you step back, is all you want for your children. 

 

Now three years old, Idris is hitting all age- appropriate milestones, never refuses his daily (and lifelong) medication and is always well mannered. He has taken all of this in his stride and has remained positive and his happy wicked self. He’s a real-life charmer who lights up a room with his presence and we look forward to every day we spend together – until he is old enough and too cool to ‘bother’ with his parents!  

 For every mountain Idris may climb we will be there every step of the way. This whole journey has taught us so much of how to be vulnerable, how to accept help and most of all how someone so small can be so mighty.  

 My advice to any other parents who find themselves in our situation would be: 

• Trust your instincts and don’t be afraid to question what you’re told.  

• Breathe, don’t take everything at face value, especially from online sources.  

• Be prepared for appointments and, most importantly,  

• take time for yourselves.  

When Idris was diagnosed, I really struggled to come to terms with it—most of the stories I read involved much older children, which made me feel even more overwhelmed. It’s okay to feel anger and sadness during those early days. I spent a lot of time in a dark place, crying and refusing to accept that this was happening to my baby. I couldn’t see a way forward, and I felt trapped. Idris, fortunately, remained his usual happy self, but he had no understanding of what was going on. I was consumed by uncertainty. 

 

 

Looking back, 18 months on, I would say to any parent—be kind to yourself. I didn’t realise just how important this was. Allow yourself to accept help, and remember there are treatment options, and the side effects are not always a given. These days, I treat Idris just like any other child. I don’t want AIH to define him. Every night, I tell him, “You are brave, smart, beautiful, and above all, you’re capable of anything.” Time truly is a healer. I didn’t believe it at first, but now I know it to be true. 

Take time to celebrate, reflect, and heal. 

 

 

 

Around the time I was diagnosed, it was also explained that a liver transplant was likely in the future, and I think this worried my parents and family much more than it did me. Children are so resilient. You only have to spend a little time in a children’s hospital to be inspired by their ‘get on with it’ attitude. Besides, the doctors also said that I would hopefully make it to 18 before needing one. As a 10-year-old, 18 was so far away that I didn’t want to think about it, I was still a child, I couldn’t comprehend life as a teenager never mind nearly a decade away.  As it turned out I’ve made it to 22 and still not needed one! 

As luck would have it on the very day I was diagnosed with liver disease, I met Rachel Quinney-Mee , also from Northern Ireland and her daughter, Lucia who was a similar age to me. Meeting Rachel and Lucia was something I will be eternally grateful for as from that moment on I knew I would never be alone in my journey with liver disease. They told us about Children’s Liver Disease Foundation and how they could provide information to my family, my school and myself in a way which was understandable and not so daunting following my initial diagnosis.  

 When I was a bit older I attended a weekend trip organised by CLDF with other kids in a similar position to mine and despite the fact they all lived in a different country to me, it was the first time I felt ‘normal’ in a group of people my own age and inspired to not let this condition become my identity.  

 One advantage of being diagnosed at a young age is that none of my peers had started to drink alcohol. It was explained clearly to me that I needed to do everything possible to keep myself and my liver healthy and that obviously didn’t include drinking alcohol. At the time I was not of the age to be tempted by it and then once my friends began to drink alcohol, they were all very cautious and protective of me, but they also didn’t make a big deal out of it, so I never felt uncomfortable.  

When I left home to go to university, I was worried what people would think of me because I didn’t drink and never had. Going to uni is hard enough anyway. You’re in a new place trying to make new friends and I didn’t want to be labelled for something out of my control from the beginning.  Again, I was very lucky that the friends I made didn’t make any differences, I was still invited to all the parties, and I had just as much fun as everyone else.  

 

 

Other than that, health wise I have always been active, but I am also a picky eater, it was particularly bad when I was younger, so I had to take vitamins during my teenage years as I wasn’t getting the nutrients required for a healthy child never mind someone with a chronic health condition. 

 Now my condition is stable I speak to my consultant every six months – following the pandemic these consultations have all been over the phone. This suits me best as I live in Manchester, but I have kept my care back home in Belfast. When I go home during the academic year, I always organise to have my ultrasounds and bloods taken while I’m in the country; these usually happen every three to four months.  

 Medicine was not actually my first career choice. Growing up, I wanted to be a vet but one of my consultants told me that due to infectious diseases and my condition I could not work with animals. He is now jokingly referred to in our household as ‘The Dream Crusher’ but in fairness, he did make me think again about what I would like to do, and I switched to humans!I During my first few years of living with liver disease I had many procedures and I was once in hospital close to Christmas, I needed to go to theatre where my anaesthetist was called Dr Dragon. From that moment on I wanted to be an anaesthetist. I was so fascinated by him, his scrub cap, his name and everything he was doing. Curiosity got the better of me and now here I am over 10 years later living out my childhood dream! 

 Obviously getting here hasn’t all been plain sailing and I would say that fatigue is probably the most difficult aspect of my condition. I find it is the hardest thing to explain to others who have not experienced chronic fatigue, and I hate letting my condition get the better of me but sometimes the tiredness does win.  

 

 

It is something I struggle with as I hate to believe people might think I’m being lazy. It was most definitely challenging revising for exams, the entire way through my education, as the long hours required can be exhausting – for everyone, not just me, but medicine is something I am so passionate about and I remind myself often of why I want to be a doctor to drive myself through the more challenging times. I find during peak exam season is when I become least well, and I think that is due to stress and the pressure I put on myself to do well. Only recently have I planned in advance for these scenarios so when it comes to exam time I make sure every day I take time to myself to switch off and take a few deep breaths, I also make sure I’m eating well and getting outside to exercise as I know this helps my physical and mental health. 

I’m now in my third year of my degree. I took a year out after school before starting my studies at university and I have also resat a year, so I am a year or two behind my peers, but I wouldn’t change a thing about my journey to becoming a doctor. It might have taken me off the beaten track, but I am exactly where I am meant to be, and I love it here. Manchester is a great city for socialising; there is always something to do and someone new to meet. I’ve been extremely fortunate to keep a busy social calendar both here in Manchester and back home in Belfast; since starting uni. I’ve been on holidays, a ski trip, to music festivals, ran a half marathon, got interviewed by the BBC, attended charity events, squeezed in the Miss Northern Ireland competition and even landed myself an award for the most inspirational young woman in Northern Ireland in 2023! It’s been a busy few years but 10 year old me who was afraid of what the future held would be so happy I have not let my silly little liver hold me back. 

 

In terms of what I’d like to do with medicine in the future I would say anything but livers! I’m sorry to all my consultants and nurses who love hepatology but it’s just not for me. The liver is a hard organ to master, way too complicated for me, and I like to be a patient when it comes to my own health. Of course, I probably know more than the average patient that comes into clinic to visit their doctor, but I don’t want to know too much. I would be afraid that I could be scared if I knew too much about the complications or when things go wrong, and it would create some medical anxiety, so for me a slight ignorance is bliss, and I’ll leave my liver to the professionals.  

 Medicine has so much to offer and there’s a right fit for everyone studying it. Right now, I would like to be a paediatric anaesthetist but who knows where I will end up. I’m right at the beginning of my journey and the opportunities are limitless. 

 To other young people with a liver condition who have big ambitions my advice is very simple – DO IT! It’s often easy to fall into the rabbit hole of ‘what if?’ When this happens to me, I think ‘but what if it all works out?’ You’ll never know unless you try. I have had many setbacks in life, both personally and academically but I still wake up every morning and try to do a little better than the day before. My mum reminds me of a story when I had my first big surgery and I was due to go on a school trip the week after, she didn’t want to send me in case I got sick or hurt while I was away but the doctor insisted I went as I might never have the opportunity again. It was a harsh reality mum had to accept, she sent me, and I did get somewhat poorly while I was away, but I survived! And I’m so glad she sent me as that was the first step to me achieving the mindset that I have now.  

I am incredibly passionate about supporting children and young people to fulfil their dreams, children are so incredibly brave and resilient and they should not be defined by something outside of their control so if I can help them in any way I will always reach out a hand and help them get to where they want to go in life.