Although Georgina was born with a childhood liver disease, it was not until she was an adult that her condition had a major impact on her. Here is her story.
I was born in 1981, in The Netherlands where my family were living at the time. I was diagnosed with biliary atresia at the age of seven weeks and had a Kasai operation when I was 11 weeks old in Sofia Kinderziekhuis in Rotterdam. Apart from a few cholangitis episodes that either were resolved by themselves or with antibiotics, I was very lucky. My childhood was very normal, I was on the swim team, loved horse riding and when I left school went to university. I started working in London after university and did everything that ‘normal’ people would do apart from drinking alcohol. I may not have been the merriest at the party alcohol-wise, but I was definitely the one who felt the best the morning after! I met and married Mark and we set up home together.
CLDF had provided my parents with support when I was little and because of that I know my family were always keen to give something back. My mum and her friends ran a half-marathon for CLDF, and we would give to the charity regularly. So I knew they were there in the background when I was young but the charity then was very different. There weren’t any special events or chances to meet other children with liver conditions like there is now. I spent all my childhood never having met anyone like me. The first time I met someone in my situation was when I went to a CLDF AGM in 2009 to speak about my experience. After that, I really feel that it is so important for children to not think they are different from everyone else and to have peers to speak to and share similar experiences. This inspired me to run the London Marathon for CLDF the following year. It was extremely difficult but an achievement I’m really proud of. Running across the finishing line wearing a CLDF top is a memory I will never forget.
Georgina was proud to complete the London Marathon for CLDF
The first time my liver condition had a real impact on me was when I started bleeding from portal hypertension when I was pregnant with my daughter in 2013. I had to pretty much stay put for much of the pregnancy which was extremely boring but worthwhile as my daughter was born perfectly healthy by elective caesarean as was my son two years later.
A couple of years after my son was born was when things started to go downhill. I had an emergency situation with portal hypertension and went straight to Kings. They fixed the bleeds with bands and glue, but this episode led to more tests. While I was in hospital recovering, I was told that I would most probably be assessed for transplant. This was a very big shock to me. I had felt tired and quite run down for a while but felt that it was because I was caring for two small children. It was in fact a sign of my liver failing. I had thought that I would have had more of a build up to this, in fact I had but my body was just pushing itself so much to cope and I hadn’t realised. My own liver had carried me as far as it could do. A transplant was always something that I knew was going to be in my future and I was so fortunate that my condition had never limited or defined me until this point.
I was on the waiting list for five months. I got my important call five days before my 38th birthday in December 2019. This was relatively short as I have one of the rarest blood groups in the UK. The gratitude I feel for my donor and their family is indescribable. I think about them every day. The whole transplant process which includes the assessment, waiting, operation and recovery was the hardest thing I have ever done. I had a photograph of my family on the table in my room. My husband and children were my biggest motivation to get home. My mum moved in with us from the day I got my call. She and Mark were a team and when one was at home for the kids the other was at my bedside. My Dad and brother would come and entertain me during the evenings and my sister, in Texas would speak to me in the night, thanks to the time difference, if I was having troubles with sleeping. My family and close friends were my supporters and cheerleaders. It may just have been me going through recovery, but it was a huge effort by everyone to help me through it all.
I was asked to be a trustee shortly after the marathon. The board is made up of people from different backgrounds personally and in business. As a ‘patient’ I can give a unique view on what it’s like to be someone who benefits from our work. Together we make sure the funds and decisions made are the best for the charity. Our aim is for CLDF to be around for many years to come.
In December 2025 I celebrated my six year ‘liverversary’. This means I am now in the long- term transplant clinic at Kings which feels like a really great milestone to have got to. I’m also back to working full-time now as I had been job sharing since having the kids. I do get my tired days when I have done too much but I’ve learned to be protective of my energy.
I had a small BCC removed from near my eye last year, so will now be checked annually by dermatology in my local hospital and I have to keep an eye on the immunosuppression symptoms. This kind of thing does hammer home that a transplant is a treatment and not necessarily a cure and it’s so important to take care of every aspect of your health.
This year I took part in the British Transplant Games, taking home two bronze medals in the pool. I did it mainly out of a desire to show the kids how far I’ve come since they remember seeing me very poorly. Their cheers were my favourite to hear!
A few years ago, we moved from London to Hampshire and are lucky to live close to the beach which means we can sneak in some after school trips there when the weather’s good. We do enjoy going back to London for a treat though, as well as family holidays at home and abroad. The ability to have these adventures and experiences is a gift that I believe I owe to my donor, my family and to myself and I feel lucky every day to be able to do it.
Georgina today with husband Mark
