@ddwilliams, PSC is a rare disease, and you are fortunate that your son was able to get a diagnosis early. Unfortunately there is no cure for PSC, and some patients progress to liver failure while others do not. My PSC was discovered when I was an adult. I do not have any experience with pediatric PSC, and I want you to be able to talk to others who are living with Pediatric PSC. Do you know about PSC Partners Seeking a Cure? - PSC Partners Seeking a Cure provides education and support to PSC patients, families and caregivers and raises funds to research causes, treatments and cures for primary sclerosing cholangitis.

Here is the Home Page. http://pscpartners.org/
and
Here is the link to PEDIATRIC PSC - http://pscpartners.org/pediatric-psc/