Mairead, Author at Childrens Liver Disease Foundation

Why I wanted to follow in mum’s footsteps!

Mairead — Tue, 26 May 2026 10:52:04 +0000

When Jess first ran the London Marathon 15 years ago, it was to raise funds for Children’s Liver Disease Foundation, in return for the information and support she’d received when her little girl, Alice, was diagnosed with biliary atresia. So, it was a very special occasion this year when Alice, now a 24-year-old paediatric nurse, took on the marathon, to raise funds for the same cause! Here is their story.

Jess’ story

Running the London Marathon is such an amazing and rewarding experience, that’s why I have run it twice, initially in 2011 in 5hrs 33mins and the second time in 2015 in 5hrs 15mins. I continue to enter the ballot each year, although if I did get in again, it would probably take me much longer and my body wouldn’t like it much!

I have always wanted my children to have the same experience, the training, the challenge, the sense of achievement and exciting togetherness whilst running with thousands of other people. I was very pleased when Alice started running 5Ks whilst at university, I remember thinking then how beneficial this is for her health and well-being. So, when she said she wanted to run the London Marathon I was so proud and very excited for her. I was a little anxious throughout her training, wondering what the effect would have on her body and her liver, but Alice is strong, resilient and sensible, she knows her body and she read all about the nutrition and hydration needed.

Once Alice commits to a challenge, she goes all in to achieve her goal, she’s a real inspiration. And although I knew she could do it and I knew she would love it, I didn’t realise how calm and confident she would be during all those hard training runs, she never complained once. My brother has done over 20 marathons, so she took a lot of advice from him, and he also went with her on a few of her long training runs, (he’s a very proud uncle now!) The only input I had was telling her how all the training and the hard work will be worth it on the day. She motivated herself!

And when the big day came, I have to say, I loved, loved, loved watching Alice run the marathon, I found it all very emotional, I was so proud wanting to tell everyone what she was doing and why. Unless you knew Alice in her early years, it is difficult to understand what she went through and why running 26.2 miles is even more of a massive achievement. Did I ever think all those years ago she would be doing this? Definitely not! Did I worry about her during the marathon, Yes – I always worry about her, I think that’s what parents do but I also know she is healthy, fit, well and strong. 

I’m so happy for Alice to have achieved another super event in her life. The fact that she achieved this and raised money for the British Liver Trust makes the whole experience even more special. She recognises how important this charity is to others as it is to her and us.

Alice’s story

Since my mum took part in the marathon, we have always watched it on TV which made me really want to take part myself. I have a list of 30 things to do before I’m 30 and this is a big one on there! I always knew that mum had run those marathons for CLDF and the money she raised and the training she put in was inspiring to me to do the same, as I know how proud I was of her.

Biliary atresia has always been a part of my life. I had two operations and plenty of years in and out of hospital up to 2009 but I’m lucky enough to be currently very stable and healthy. I have appointments once a year for blood tests and scans which are always nerve- wracking. But I’m not on any medication at the minute which I’m incredibly grateful for, and I know I’m privileged to be in this position, as many in my situation have had a transplant already. 

The impact of my condition is not really the physical way people would assume, it’s more of an emotional burden – the thought that one day I could need a transplant and having to be cautious with alcohol. But equally it makes me want to do as many things as I can and truly appreciate how lucky I am. I thought that to be able to run a marathon with a liver disease is pretty good going. And to be able to spread awareness for this disease is so important as it’s not well known at all.

Although I have always enjoyed running, it’s always been on a small scale and never that serious. So once I began training for the marathon, I impressed even myself, seeing how just a few months can improve my distance dramatically. 

As for the day itself, I have to say I absolutely loved it! I was so nervous beforehand, but I called my parents and thought about why I was running and it made me so excited. I also met a man on the train who had run 17 marathons so I thought this can’t be as bad as that! The atmosphere was incredible and so motivating. I’d seen it on the TV of course but experiencing it as a runner was a whole other level. Seeing everyone cheer for their loved ones and all the charities was so special.

It’s undoubtedly a challenge! The first 19 miles were ok although it was very hot, but the last seven miles was the real hard part. Having to walk because I felt so sick wasn’t what I anticipated – I thought it would have been my legs that gave way first. And hearing strangers cheer for you is a strange but also very motivating experience.

I wouldn’t have got through it without my friends and family coming to see me. The support I got on the day was so valuable. My other motivator for running was my grandad who unfortunately passed away on Christmas Eve, he was such a big supporter of mine and I know he would have loved to have seen me run.

In the end I completed it in 5 hours 17 and raised £2,906! Everyone has been so generous, and it felt great to smash my original target of £2000. I now feel really proud of myself both to have run a marathon but also to have raised money and awareness for liver disease. It was such an emotional day and the memories it’s given me are so special. Now I can say I ran 15 years after my mum for the exact same reason!

The post Why I wanted to follow in mum’s footsteps! appeared first on Childrens Liver Disease Foundation.

Growing up with biliary atresia and finding purpose on the other side

Mairead — Mon, 18 May 2026 16:56:27 +0000

We’re very grateful to Aaron, a resilience speaker and author from the USA for sharing with us his story of growing up with biliary atresia. While there will have been differences in his medical care, compared to the UK, his message to young people with biliary atresia is an inspiring and universal one.

I was born on December 20, 1983, five days before Christmas, and I came into the world already fighting. I just didn’t know it yet. And neither did anyone else.

The Diagnosis: A Christmas baby and a bilirubin lamp

When I was born jaundiced, nobody panicked. My sister had been born jaundiced three years earlier, and she was perfectly fine. So the hospital placed me under the jaundice lamp, the blue phototherapy light that helps a newborn’s liver break down and excrete the bilirubin that causes that yellow tinge in the skin and eyes, and sent me home three days later in a Christmas stocking.

For parents reading this who have just been through the same thing with their own baby, I want to explain what was happening in my body during those early weeks, because understanding it helped me make sense of my own story later. When a newborn is jaundiced, bilirubin, a yellow substance produced when red blood cells break down, builds up in the blood because the baby’s liver isn’t yet mature enough to clear it efficiently. Phototherapy works by using blue light to convert bilirubin into a water-soluble form the body can excrete. In most babies, the liver matures, bilirubin clears, and the jaundice resolves within two weeks.

Mine kept coming back.

My parents could tell something was wrong. I wasn’t eating well. I wasn’t thriving the way I should have been. At my paediatrician’s office, they continued to run bilirubin tests. The levels would clear after treatment, and then, days later, I would fall ill again. The pattern repeated itself several times over the first months of my life, and each time the answer seemed to be the same: treat the bilirubin, send the baby home.

What was actually happening, what nobody had yet identified, was that my bile ducts were blocked. In biliary atresia, the ducts that carry bile from the liver to the small intestine are either absent or severely damaged. Without a clear pathway for bile to flow, it backs up into the liver, causing progressive damage. Phototherapy can temporarily reduce bilirubin in the bloodstream, but it cannot fix the obstruction causing it. My bilirubin would clear on the surface and return from within. The system was broken at the source.

It was a young doctor who had recently been transferred to my paediatrician’s office from Children’s Hospital Los Angeles who finally saw what others had missed. His name was Dr. Praful Shah. He recognised my symptoms, ran the correct tests, and delivered the diagnosis: biliary atresia.

I was subsequently referred to Children’s Hospital Los Angeles (CHLA) where I would undergo the Kasai procedure at 115 days old.

Even at that point, my parents had to wait nearly three more weeks after diagnosis before surgery. I can only imagine what those weeks felt like for them — knowing what was wrong, and waiting.

The Kasai and the years that followed

The Kasai procedure, hepatic portoenterostomy, was performed at CHLA when I was 115 days old. The surgery, which creates a new pathway for bile to drain from the liver, went well. And remarkably, for a biliary atresia child, my outcomes were unusually good. I never developed portal hypertension. I never experienced cholangitis. The Kasai, as my doctors later told me, appeared to have worked as well as it possibly could.

I am not sharing that to suggest my childhood was without difficulty. I am sharing it because I know that parents of newly diagnosed children read stories like mine looking for hope, and the honest truth is that a Kasai procedure performed well, and early, can give a child decades of functional life. I am proof of that.

The complications I did experience came later. In my junior year of high school, I was hospitalised with a high fever that lasted about a week. In my early thirties, those week-long feverish episodes returned periodically — my body reminding me that my liver, however resilient, was still carrying the weight of a condition that had been with me since before I could walk. Through all of it, my MELD score remained low, which meant I wasn’t sick enough to list for transplant just yet. I existed for years in a kind of limbo that many BA adults will recognise: not well enough to forget, not sick enough to be prioritised.

That changed in 2017, and by 2019, my body had reached its limit. What followed, two liver transplants, a kidney transplant, 17 surgical procedures in five weeks, four months in hospital, relearning to walk at 115 pounds, is a chapter that could fill its own story. The short version is this: I survived. And I rebuilt.

Growing up: The spleen guard, the laughter, and the loneliness

Biliary atresia was always present in my childhood, though I learned early to carry it in ways that didn’t announce themselves.

The most visible reminder was on the sports field. Because my spleen was enlarged, a common consequence of liver disease, I wore a large plastic protective device under my jersey whenever I played certain sports (basketball and baseball). My doctors were very clear with me: a direct impact to the spleen could cause internal bleeding. That was a heavy piece of information to carry as a kid who loved sport and wanted nothing more than to be the same as everyone else athletically. I was always a little more cautious than my teammates, always holding something back. I’ve wondered since then what I might have achieved if I hadn’t been managing that fear alongside everything else.

In elementary school, some children were cruel in the way children sometimes are, names, questions, pointing at the thing that made me different. I learned quickly that humour was my shield. If I could make people laugh, the spotlight shifted from my condition to my personality. Laughter became a survival tool before I even understood what survival meant. It made me feel normal. It made other people comfortable. And it planted a seed in me, the understanding that how you carry a story matters as much as the story itself.

My education didn’t suffer. My friendships, by and large, were genuine. But the loneliness I felt was specific and quiet the kind that comes not from being excluded but from being unseen in a particular way. Nobody else in my world had biliary atresia. Nobody else had grown up the way I had. I couldn’t point to someone and say: there, that’s who I am, that’s what’s possible for me.

The only window my parents had into a life beyond ours was a monthly liver newsletter. Inside it, there was a mention of a biliary atresia patient eight years older than me living nearby. My mother built a relationship with her family. But I never met her. I never met another BA patient my age until well into adulthood.

I think about that a lot now, working in patient advocacy. Those children were around me my entire childhood, living the same cautious sports days, wearing their own invisible weights, laughing their own defensive laughs and we never found each other. That is the gap that organisations like the Children’s Liver Disease Foundation, and the Biliary Atresia Research and Education group (BARE Inc.), exist to close. I wish they had found me or existed earlier in life, but I am thankful for social media and the connections I have been able to make.

Life Now: From the ICU to the Speaking Stage

My career before transplant was in banking. I was a senior service director at Bank of America, managing complex client relationships with an economics degree from Florida A&M University behind me. I was good at it. But I never felt fully alive doing it.

After my transplant, after surviving what my medical team called the most complex case they had managed, I knew with complete clarity what I was supposed to do. I had been given a life back. I was going to use it deliberately.

I spent time working in the Homeless Services Division of The Salvation Army, serving people who were navigating their own forms of survival. That work fed something real in me. But eventually I recognised that my greatest contribution wasn’t going to be behind a desk at all, it was my story, told out loud, to people who needed to hear that the impossible is negotiable.

Today I am a resilience speaker, a life coach, and the author of AKDS Life: Motivation and Reflection. I created the M.E.D.S. Protocol, a framework built around Mindset, Environment, Discipline, and Spirituality, that I developed to explain what actually rebuilt me after transplant. Not just motivation. Not just willpower. Systems. The same systems, I have since learned, that can help anyone navigating a long-term health condition, a major life transition, or a rebuild after loss.

I am also an A3 Certified Patient Advocate through the Global Liver Institute, a board member of the Liver Health Foundation, and a 2025 recipient of the Liver Health Foundation Courage Award. I have spoken at Children’s Hospital Los Angeles, Business Management Schools, High Schools, various other liver foundations, and at patient advocacy conferences. And I earned my black belt in Mixed Martial Arts from the West Coast World Martial Arts Association, post-transplant, at a weight I am proud of, with a body I have chosen to honour.

Outside of work, I play golf, train martial arts, go on mindset walks, ride bikes, do yoga, cook, travel when I can, and spend time with my loved ones as often as possible. I went on The Price is Right (A famous game show in the states) and won the Showcase which consisted of a trip to Fiji, a trip to Iceland, and a hot tub. I mention this not as a footnote but as a statement of philosophy: when you have been given your life back, you live it. All of it. Loudly.

What I would tell the young people reading this

Don’t wait until transplant to live your life.

That is the one thing I would go back and tell the boy in the baseball jersey with the plastic guard underneath. I allowed the possibility of a future transplant to hold me back from pursuing things earlier, from going further, from going harder, from trusting that my body could carry more than I gave it credit for.

Any moment you have where you are feeling good, GO. Full send. Do something that will make you genuinely happy. Take the trip. Try the sport. Walk onto the stage. Apply for the thing you’ve been putting off.

We experience life based on what we allow ourselves to focus on. And if you spend your focus on what might go wrong, you will miss what is going right. Biliary atresia is a part of your story. It is not the ceiling of your story.

The children who grew up with this condition and never found each other, I was one of them. I don’t want that for the young people growing up with BA today. Find your community. Tell your story. Let people see you clearly, not through the softer lens you use to protect them from the truth of what you carry.

Your scars are not a warning. They are life credentials.

Aaron K. Jackson is a resilience strategist, keynote speaker, life coach, and A3 Certified Patient Advocate based in Long Beach, California. He is the author of AKDS Life: Motivation and Reflection, a 2025 Liver Health Foundation Courage Award recipient, and a post-transplant black belt in Mixed Martial Arts. You can find him at www.akds.life and on Instagram and TikTok @AKDSLife.

The post Growing up with biliary atresia and finding purpose on the other side appeared first on Childrens Liver Disease Foundation.

Living with liver disease has shaped me in positive ways

Mairead — Mon, 18 May 2026 15:46:52 +0000

Music student Liam is loving life at Durham University and is a big believer that a medical diagnosis does not have to define your future. Here is his story:

I was diagnosed with biliary atresia at just eight weeks old at Birmingham Children’s Hospital and underwent a Kasai procedure at 11 weeks. I don’t remember that time, of course, but my parents have always told me how determined I was from the very beginning. My early years involved periods in and out of hospital with liver infections, but by the age of two my health began to stabilise. I remained on medication until I was 11, and since then I’ve been fortunate to enjoy good health.

From a young age, I developed a strong connection with music. What began as curiosity at the piano turned into formal lessons at six, and during primary school I discovered a real love of singing, music and performing. I was involved in a number of musical theatre productions, and I also became an active member of my church choir. That introduced me to choral music and gave me the opportunity to learn the organ.

Growing up, I rarely felt limited by my condition. I did avoid high-impact sports, which at times felt isolating, particularly when I was younger. However, music gave me both a focus and a sense of belonging. I threw myself into as many musical and non-musical ensembles as I could, building confidence and forming lasting friendships.

I joined the Scouts at the age of six and became a volunteer at 14. Scouting has played a huge role in shaping who I am, giving me opportunities and experiences I will never forget. Through Scouting, I completed my Bronze, Silver and Gold Duke of Edinburgh’s Awards, taking part in walking, cycling and canoeing expeditions.

After achieving strong GCSE results at The Castle School, I attended King’s College, Taunton on a music scholarship, where I studied A Levels in Music, Biology and History. After completing my A Levels and achieving Grade 8 in singing, piano and organ, I spent a gap year as a Choral Scholar at Sherborne School. During that time, I worked in the music department and sang regularly in Sherborne Abbey. It was a hugely valuable year for my development, and I was proud to achieve a piano diploma with distinction.

I then went on to Durham University to study Music, where I am now in my second year. Alongside my degree, I hold a Choral Scholarship at Durham Cathedral, balancing a demanding academic and musical schedule. I’m also involved in a range of university societies, both musical and non-musical, and I continue to volunteer with a local Scout group in Durham.

Now an adult, I lead a full and active life. For many years I was told I wouldn’t be able to drink alcohol, something my friends always respected. However, when I was 18, doctors at the Queen Elizabeth Hospital in Birmingham told me that, in moderation, I could. I still remember having my first pint at my local Wetherspoons on the day I finished my A Levels. These days, I’m very careful and keep my intake low, never exceeding seven units a week, but I’m grateful to be able to enjoy social occasions with friends.

Looking back, living with liver disease has shaped me in positive ways. It has given me focus, resilience and a strong sense of perspective — qualities that continue to guide me as I look ahead to the future.

The post Living with liver disease has shaped me in positive ways appeared first on Childrens Liver Disease Foundation.

The response was just wonderful!

Mairead — Tue, 05 May 2026 11:08:41 +0000

We’re delighted that so many of you joined in with Big Yellow Friday and especially pleased to hear that it largely proved to be great fun too. Thank you to Susan for sharing with us how a small idea just grew and grew!

Ever since my daughter, Fearne, was diagnosed with portal hypertension five years ago the team at CLDF were a great help to us, and joining in with Big Yellow Friday seemed a great way of giving something back. My original plan was to do a small coffee morning at home. This quickly turned into a full afternoon event at our local community hall in Brechin as that way we could catch people after work and on the school run.

Once I started to share the idea with a few people, the response was just wonderful – I had so many offers of help. Friends and volunteers came forward for all sorts of roles on the day. As well as tea, coffee and cakes, we planned a raffle, face painting, poetry reading and even a spiritual medium offering readings.

We spread the word through Facebook – I created an event page, which got great engagement – as well as lots of word-of-mouth, social media sharing, and posters dotted around Brechin. It just so happened that Fearne’s school was already holding a charity day that fell on Big Yellow Friday. They organised a jumble sale with proceeds split between four charities and added a ‘Wear Something Bright or Yellow theme’, so it all tied in beautifully.

I was invited along for a small presentation at the school to accept the funds, and was happy to answer any questions the children had about Fearne and her condition. As a community Brechin has always been very supportive – they were there with us back in 2021 when everything happened so quickly, and the GoFundMe set up at the time meant so much to us, helping Fearne her brother, Brian and I deal with our time in London as much as we could, during a very difficult time. 

Nevertheless, I’m conscious that times are tough for many people at the moment and there are plenty of good causes asking for support, so I was delighted that we got such a good turnout at our event. The fundraising pack which Dora provided had lots of great information, but I was always on hand for any questions too.

The final boost came from Brian’s workplace, Taqa, whose corporate social responsibility programme matched the funds raised by employees for charities close to their hearts – and that made a huge difference to our total.

We were completely overwhelmed to finish just over £4,500. Fearne is absolutely ecstatic to see what she has achieved and honestly, so am I. Yes it was slightly stressful to plan, but it was so much fun on the day – and I wouldn’t change a thing!

The post The response was just wonderful! appeared first on Childrens Liver Disease Foundation.