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Apr 10, 2018 Latest post:
Dec 14, 2018
12 years ago Charlie was diagnosed with an autoimmune disease called primary biliary cholangitis (PBC), which causes cirrhosis of the liver. Since then medication has helped the rest of his body keep going while his liver slowly died. His liver is very nearly kaput now, so he's on the official waiting list to receive a deceased-donor liver transplant. (Several people volunteered to undergo extensive testing and donate a portion of their liver, but in the end no one was a match.) The organ allocation system is convoluted and opaque (it's not as simple as just getting to the top of the list), but we think it will produce a liver for Charlie. Whether that will be tomorrow, next week or next spring, we don't know. Thank you for sticking with us through this journey and helping us in so many ways.