Be Rare with Finn - a Column by Jay Sandstrom

Feeding small children is a daunting process for parents. Will they eat what’s been prepared? How much of a mess will they make? Are they…

When we had our two boys, my wife, Dani, and I would debate which of us they’d look like the most. It was a fun,…

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…