Be Rare with Finn - a Column by Jay Sandstrom

When writing this column, I’ve understandably focused on the various medical complexities, situations, and emotions resulting from my son Finley’s Alagille syndrome diagnosis. I…

As someone who tends to be introverted, I saw advocacy as daunting. I had a narrow understanding of how it could look. But after my…

There are many hurdles that come with rare genetic conditions. One obstacle my family has struggled with recently is that the supplies we need are…

Parenting brings many challenges, but there’s one that’s always front and center for me: keeping my sons safe and secure. As they’re 6 and 3…

After my wife, Dani, and I entered the world of Alagille syndrome and became advocates, we aimed to provide a view of everyday life…

Our kids love the water. When our lovely Pacific Northwest weather finally turns warm enough, they both beg to pull the inflatable pool from storage.

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…