Progressive Familial Intrahepatic Cholestasis (PFIC)

My 20 year old son, Evan received his gift of life on May 21st, 2020 during a 10 hour transplant surgery. Evan was first diagnosed at 18 months old with PFIC-3, a hereditary liver disease, which for years had been treated.

Living with a chronic disease has not been easy for him, but he never let it stop him from participating in sports and living a relatively active life.

After years of fighting this progressive disease, and while attending college as a sophomore, he began experiencing edema and ascites in the abdomen. By January of this year, it was discovered that he was in liver failure and would soon need to begin the assessment process in order to be listed for a liver transplant.

For the next 4 months during the COVID pandemic, he became sicker and sicker. On May 19th, nearly a month after his testing began (and with a Meld Score of 35), he was listed for a liver transplant by Strong Memorial Hospital in Rochester, NY. He was one of the sickest liver patients in our region, and just two days later (after experiencing internal bleeding), he received his gift of life.

We are forever grateful to his donor and donor family. Because of them, Evan has a new lease on life and is now healthier than ever. Thank you!

As a parent, it is so important to do as much research on your child’s liver disease as possible and work to connect with other liver families. Being your child’s advocate is so very important.

Last updated on August 5th, 2022 at 01:48 pm

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