Charlie’s story

My youngest munchkin was born in October 2012, Enola, but normally known as Eni or trouble!

Our world started to fall to pieces, or so it seemed, when she was less than 24 hours old. Eni happened to wee in front of the midwife on the first home visit and this led to a discussion about funny looking poo. Our midwife said she couldn’t remember why but that this meant something important and after a call to our local hospital we were taken in and advised someone wasn’t right with her liver. At four days old she was admitted to the Paediatric Liver Unit in Leeds and by day 12 she had her diagnosis of biliary atresia. When she was 17 days old she underwent a Kasai procedure, a nine hour operation during which one new bile duct was made using a piece of her intestine.

Eni is now four years old and whilst on the whole her health has been good, she has developed a secondary condition called portal hypertension which will need further attention in the near future. Her condition is relatively rare, affecting around 50 children a year, but it is serious and we know the chances are that one day she will need a liver transplant.

We visit our Leeds General Infirmary fairly regularly and often see Jacquie’s (from CLDF) smiley face in clinic. It so important for us to feel connected to something or someone beyond the medical professionals we so highly regard.  Having a child with serious health conditions can be overwhelming. It’s all consuming. It’s hard. As a family we get on with life as normally as we can and generally do just fine. But we know that Eni is going to have other problems and times of ill health in the future. Our lives may change and there will be little we can do to control this.

This is what has motivated me to raise funds for CLDF. It means I am doing something positive for Eni. This year I did the Great North Run for the first time. Not only did I raise over £1700 but maintaining that level of fitness means that when the time comes for a transplant, I hope to be considered as a living donor.

CLDF is so valuable to us because they help you not feel like you’re not alone. They understand. They help provide fun when the world doesn’t always seem to be that fun.