Many thanks for visiting this page and for donating to the Children’s Liver Disease Foundation. I’m thrilled to be running the 2022 London Marathon in aid of the CLFD.
My stepson Joshua was diagnosed with a rare type of liver disease when he was 3 weeks old called Biliary Atresia. This is a condition where the bile ducts haven't formed properly inside and/or outside the liver, leading to a complete blockage of bile flow from the liver.
When Joshua was 5 weeks old (2008) he underwent a 5hr operation called a Kasai where the surgeons created artificial bile ducts enabling the bile to flow. There was a 70% chance that this operation would work but if not, Joshua would have had to have had a liver transplant almost straight away. Thankfully, Joshua was one of the lucky children and his Kasai operation was a success.
Unfortunately, he will always have liver disease as the artificial bile ducts won't ever let the bile flow as well as yours or mine. Therefore, Joshua will one day likely need a liver transplant, but we hope this is many years away for him.
30 years ago Biliary Atresia was untreatable, but with research and passionate medics, the Kasai procedure was invented and so many children like Joshua have been given the chance to live a healthy life.
Joshua also has Portal Hypertension which is a knock-on effect of Biliary Atresia and has a very large spleen which means he can't participate in contact sports such as rugby. He has annual check-ups at Birmingham Children's hospital and every 2 years he has an Endoscopy for his Portal Hypertension so they can monitor what level it is at, thankfully he's still on stage 1.
Joshua will be 14 this year and is a very happy, sporty & outgoing young lad. His condition doesn’t hold him back and looking at him you would never know that he has anything wrong with him. He lives life to the full and his confidence and strength in life is what makes us so very proud of him.
The cause of biliary atresia is currently unknown, and research is ongoing. With your support I hope to raise as much money as I can for the Children's Liver Disease Foundation to help fund further research projects. We live in hope that they will find a new treatment for Biliary Atresia and other types of liver disease and Joshua just might continue to be lucky and never have to have a transplant.
We owe everything to the amazing liver team at Birmingham Children's hospital and to the Liver foundation for continuing to carry out research into Liver Disease.
Thank you for taking the time to read our story.