Columns

Alongside our daughter Eva’s diagnosis of progressive familial intrahepatic cholestasis (PFIC), we learned that our future children would have a 25% chance of having…

Parenting is hard. Add in a rare genetic disease, and the stressors change. Taking time for yourself as a caregiver is vitally important to help…

When our son Finley received his diagnosis of Alagille syndrome, our family began to address the steep learning curve that is understanding a rare…

As we advocate for our son Finley, my wife, Dani, and I aim to share our family’s daily life for other parents learning about their…

Learning about Alagille syndrome has been a challenging task. My wife and I have done the research, read the studies, and combed through many…

We received the diagnosis that our son, Finley, had Alagille syndrome when he was 4 months old. All we’d known during his first few…

Before having our son Finley, our exposure to the rare disease world was limited. Most people we’ve encountered since receiving his diagnosis have had the…

For me, one of the most dreaded parts of being the parent of a child with a rare genetic disorder is getting lab work done.

One thing I aim to do by writing this column is to bring some focus to what life looks like when raising a child…

Traveling with small children is challenging. While the destinations that are visited and the memories that are created are worth it, getting there entails a…