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.
I can’t wait to soon be able to get back out into the world. The Covid pandemic has hampered our list of things we want to do now that I am better and can travel but once we can, we will be making up for lost time. CLDF have supported me and my family from baby to now. I may be much older than our targeted demographic, but the charity has been a constant in my life through the ups and the downs. I want every child, sibling, parent and grandparent to know that even though a liver condition has been introduced into your world, your lives can be enhanced and not hampered by it. I have never wanted to be defined by my liver disease however it has made me into the person I am now. I am someone who will be eternally grateful for everything life has brought me and all the milestones I have reached despite my diagnosis at birth.
Georgina today with husband Mark