Every week 20 children in the UK are diagnosed with a life-threatening childhood liver disease. There is still no cure and little understanding about the causes and treatments. All children affected will require a lifetime of care with many requiring a liver transplant.
Our daughter Abigail was born on the 17th September 2014. Five weeks later she was still very jaundiced. We brought her to the Doctors and he sent us straight to our local hospital, after some blood tests, we were sent in an air ambulance to Birmingham Children’s Hospital. After further tests at 6 weeks old, she was diagnosed with the rare liver disease, Biliary Atresia. Biliary Atresia is where the bile ducts on the inside and outside of the liver are affected eventually leading to a complete blockage of bile flow from the liver. This, in turn, causes scarring (fibrosis) in the liver which means Abigail’s bile ducts were damaged and her liver was not functioning properly. At 7 weeks old Abigail had life-saving surgery known as the Kasai procedure to try and create a functioning bile duct. The surgeon told us that there was a 1 in 3 chance of this being successful. Thankfully Abigail’s surgery was successful and so far she is living with her own liver, however, there is a chance that she will need a liver transplant in the future. Since then she has been monitored closely by the liver team from Birmingham Children’s Hospital which involves lots of hospital appointments and blood tests to check her liver function. She is now 3 years old and is currently doing well. When your child has a liver disease it affects the whole family but the support of Children’s Liver Disease Foundation(link is external)has been invaluable to us all as a family.
We held a Big Yellow Friday charity coffee morning on Friday 9th March 2018 in NIEA Lisburn site in aid of Children’s Liver Disease Foundation(link is external). There were about 12 bakers who contributed lots of sweet treats such as cupcakes, chocolate cakes, buns, shortbread, brownies, apple pies and rocky roads. We had a Mother’s Day cake stall where there were lovely Mum cookies and gin and tonic cupcakes! Then we had a breakfast bar where there was bacon and sausages baps available. We raised an amazing £820.
We would like to say a special thank you to all who support Children’s Liver Disease Foundation.
