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Home What we do Meeting and Sharing Share your story

Share your story

Hearing how people deal with childhood liver disease can be very valuable. They can offer insight and hope as well as practical advice on the liver disease journey.

Find stories from parents, carers, friends and relatives below and also in our blog section. Use the search box to find stories containing particular key words such as a certain liver disease, procedure or issue. If you can't find what you're looking for, please double check spellings as incorrect spellings won't be picked up.

If you would like to submit your own story, we would love to hear from you. Please use this form if you are a parent or carer, and this form if you are a friend or relative.

If you have any queries, contact CLDF's Families Team.

  • He is fantastic now. His milestones were very slow, he teethed at about 18 months, walked at nearly 22 months but he is now leading life as normal and we are just trying to cope.


  • She was taken by air ambulance to the hospital and within five days was on the super urgent transplant list. She had her transplant within 2 days and recovered very quickly.


  • Demi is such a great kid and never lets anything get her down, the liver is fine now but she has a lot of other stuff going on.


  • His tummy is very large so sometimes climbing over obstacles can be an issue and he often has a bloody nose and bruises easily but he doesn't let that worry him!


  • My first reaction was why me? What did I do to have something like this happen to me?


  • He swims, plays football, does break dancing and street cheer and is even going to dance at national level later this year.


  • I was a practical and emotional support. I stayed in hospital when she was in overnight and I hugged my sister, brother-in-law, brother and parents when needed


  • We were shocked and saddened but the good news was that there was an experimental drug that could keep her alive long enough for a transplant!


  • After several tests, my granddaughter was diagnosed with Biliary Atresia and was having a 4 hour operation called a Kasai