In May 2015 our 5 week old daughter was diagnosed with biliary atresia a rare and life threatening liver condition. She underwent life saving surgery the same week to try and restore bile flow and save her tiny liver.

As new parents we weren’t aware that jaundice wasnt normal at 4 weeks, but thanks the the children’s liver disease foundation and their amazing online information we were alerted to the fact that prolonged jaundice is in fact a sign of liver disease. Armed with this information we refused to leave the GPS without a referral. 

The operation Ada had (the kasai) is only successful 60% of the time, 40% of children continue to deteriorate and require a liver transplant in the first year of life. Thankfully for us Ada’s was successful which I believe is down to not only her amazing surgeon and after care team but also early detection of her condition, which happened thanks to CLDF and their information. Even though the operation was a success Ada will more than likely go on to need a transplant one day.

CLDF have continued to be an amazing support to us as a family, from sitting with us giving us stories of hope whilst Ada was in theatre to organising family fun days so we can meet other families in our position.

2 children each day are diagnosed with liver disease (there are over 100 different conditions) yet CLDF are currently the only UK charity supporting families like ours. They  are a tiny charity and rely heavily on fundraising.

Since diagnosis we have thrown ourself into fundraising as a way of coping but also to help make sure CLDF remain there to support Ada and children like her, and to maybe one day help find a cure.

In April 2019 we will both be taking part in the London marathon for CLDF. We will be doing a number of fundraising events in the build up to the marathon to help raise the required funds, the first being THE FULL MONTY. Michael and 6 of his brave (some may say stupid) will be baring all at The Thorpe Park hotel in front of 140 guests. Please please please if you can help by donating any amount we would be bery grateful. Let’s help find a cure for children like Ada and ensure they get the chance to live a long and happy life.

Much love

The Butterfields