“The support CLDF provided in the first few weeks of diagnosis was priceless to us.
My instinct told me just weeks after having my twin boys that there was something wrong with Reid. He wasn’t thriving in the same way has his brother, Eldon. He wasn’t gaining weight and his skin was a yellow colour. When his eyes turned yellow, we took him to the emergency walk-in centre but we were completely unprepared for what followed.
To be told when your twins are nine weeks old that one of them has a rare disease you’ve never heard of and then goes into surgery for over six hours, then people start mentioning transplants is scary to say the least.
Obviously we were anxious for more information but when we Googled biliary atresia, as you naturally do, all the results were from medical journals except for the CLDF page which explained it all in plain English. This helped me to explain to our friends and family what was wrong with Reid.
I quickly found the CLDF Facebook page, messaged them, and within 24hours their families officer had been to see us on the ward with lots of literature. This information wasn’t just for us – there was specialist information for our local GP surgery. I am delighted to say that when I passed it onto them, they reacted very positively. It has led to changes in practices and retraining of staff at the surgery so I now feel confident that future cases could be picked up more quickly.
CLDF also put us in contact with other families so we could talk to them and gain an understanding of how biliary atresia would fit into our lives and what living with it could be like. This has actually led to new friendships and given us support as hospitals can be lonely and scary. And of course the biscuits and tea and friendly ear on their regular visits to the ward are always welcome!”
