My baby cousin, just a few months old has been diagnosed with Alagille Syndrome. I did a lot of research and so did the nurse since neither of us have heard of it before, obviously rare. The only thing I've really read it's that's it's a Liver disorder due to less Bile Ducts causing the liver extensive damage, she will be on medication and according to the Dr she probably wont make it past 20 years or age if she doesn't get a transplant. We are starting to test family members that are willing to give part of their liver, that way we find a match sooner rather than later.
Please if you have any info, have, or know someone that has Alagille Syndrome please inform me of it and what we may expect