Karen and David and daughter, Emma, who is now 20, have appeared in numerous CLDF publications over the years. Here the family explain what the charity means to them.
Karen and David appeared on the front cover of Delivery in 2004, alongside fellow fundraiser, Ed Butler.
Emma was only two weeks old when she became jaundiced, but it took another two weeks for anyone to think there might be something wrong with her liver. It was the health visitor who referred her for further investigation.
Tests revealed that Emma had biliary atresia and it was when we were at St James’ hospital in Leeds, where Emma underwent her Kasai procedure, that we first heard about CLDF. A representative from the charity came to the ward and provided us with information about Emma’s condition and contact details for CLDF.
We appreciated the information because we knew nothing about liver disease in children and I’m sure we didn’t realise at the time how valuable the support was going to be. Despite having a Kasai, it was soon clear that Emma was going to need a liver transplant. She had her first transplant when she was just nine months old but unfortunately had to undergo another three years later.
Those early years were obviously a stressful and worrying time and CLDF were there for us with whatever support and information we needed. As Emma’s health improved, her dad David and I started fundraising for the charity in a variety of different ways and I subsequently became a trustee for a few years.
Admittedly this takes time and energy, particularly when you are both working, but I really wanted to give something back. Fundraising gives you a focus. It’s very difficult to watch your child undergoing medical procedures when you know you can’t just make it all better. But you feel less helpless knowing that you are doing something for the charity and for other families.
CLDF have always been there. I know that they supported my parents when I was undergoing my transplants and as I grew up, I joined in with the activities and experiences which they offered me. This led to my trying out things I would not have otherwise done, such as making a film at Talk Tell Transform and the amazing Rickshaw Challenge for BBC Children in Need. I’ve also made new friends through the charity – having people around you who understand what it’s like to live with a liver condition is a huge help.
I’m currently in my first year of a Primary Teaching degree. I’m really enjoying my course and am finding it really interesting. I am lucky enough to be getting on well with and enjoying the online learning which we are all having to cope with at this time. In terms of my health, everything is going well at the moment, and I am happy and healthy. All my appointments are through phone calls, with bloods every three months if it is safe to do so. Although life is going well for me right now, it’s good knowing that the team at CLDF are there for me still, just as they have been all along. I know that if I have any questions, concerns or worries, they are just a phone call or email away to help me understand whatever it is that I am going through.
Emma with her parents today