Columns

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…

One difficult thing about a rare disease is that there are so many unknowns, and it’s not always obvious where the answers can be found.

I love shoes. Shoe collecting has been a hobby of mine for quite some time. A good pair of sneakers or boots can take your…

There are several words I’d use to describe my 3-year-old son, Finley. My wife, Dani, started a tradition for our two boys where each night…

Feeding your newborn child can be stressful. There are so few things they can control in their young lives. It’s common for children to learn…

There are many terms I had never heard prior to having a child with Alagille syndrome. One of them was cholestatic pruritus, otherwise…