My Story

Everyday little hero's are born with all different types of liver disease and they will go on to fight their own battle.

A diagnosis of liver disease has a huge impact upon a child and everyone around them, each child is different and therefore the support that CLDF provide will be different. The support and work that CLDF provide towards research and those children and their families is vital.

Andrew, my big brother, was born with Alagilles Syndrome, a disorder in which you have fewer bile ducts than normal in your liver. He was just 10 weeks old, a tiny little baby with jaundice and itchy skin when he was diagnosed. He was just 2 when my parents were told his heart was affected. I can't even begin to understand the worry my parents would have felt at this time. 

Andrew lead as normal life as possible but at age 8 he deteriorated and was blue lighted to Kings Hospital after a severe bleed. He was referred to Addenbrookes hospital in Cambridge and it was there he met the amazing late Sir Roy Colne, who took one look at Andrew and said transplant! Whilst some parents at the time were extremely nervous about having a liver transplant, Andrew did not have a choice. After the first liver rejected it was the second one that was successful. 

But his fight didn't end there and he was diagnosed with Pearthe's disease, a crumbling of the ball and socket joint. At age 11 he had another operation but as a result he had one leg longer than the other and had a limp. 

Andrew went back to school after missing several months but we was severely bullied even after everything he had been through! At this moment I know Andrew would have liked to have known about CLDF charity and speak to someone to help him. 

Andrew has since had a full hip replacement, more work on his liver, open heart surgery, and just recently Andrew contracted sepsis.

We were told Andrew had kidney failure, the sepsis had probably gone to his heart and the next 24 hours were crucial. Those moments are extremely hard times but we believed in Andrew and somehow he came through again!

Andrew is 43 and far out lived his life expectancy, he is doing well but every day is a fight, and I know there are days when he doesn't want to. He has dialysis 3 times per week and is currently awaiting a kidney donor, one that may see a member of our family donate for him. Alagilles doesn't define Andrew or my family, we get together and we laugh a lot. He is a proud Uncle to his nieces and nephews and they absolutely love him to pieces, and my Mum and Dad now in their 70's, are by his side every step of the way.

Andrew is just one of so many stories of children, teenagers and adults suffering with liver disease, trying to figure out why and how. When your child is poorly you want to do everything you can for them, protect them and cure them. Charities like the Children's Liver Disease Foundation can help to process all of the information, to provide support emotionally and be there for so many. 

The London Marathon will be the biggest challenge I have ever faced and I will wear my CLDF bib with such pride. I am running this race for all the children who are diagnosed, for all of the survivors and for all the little angels like our friend Jennifer. But I run this race for Andrew and even when it gets really hard I will think of your courage Andrew and I know it will get me through. 

Please please donate to this amazing charity and help all of those children and families

Wish me Luck xx xxx