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What Is Was When My Two Sons Got a Rare Liver Disease Diagnosis

Like so many young couples, my husband and I knew we wanted to start a family. That day came on May 31, 2000, when Evan, our first of three sons, was born.

Despite jaundice that appeared for about a week after his birth, he was as healthy a newborn as any parent could hope for. We visited the pediatrician for well child visits and were proud that he was growing typically and achieving all the baby milestones.

Despite these wellness visits, there were many missed signs that my son was not as healthy as everyone thought. We didn’t realize that what we thought was “eczema” and excessive itching of his face and ears was an indication of a very serious disease.

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