Be Rare with Finn - a Column by Jay Sandstrom

Our family has been extremely busy lately. The beginning of the school year is always an exciting yet exhausting time as we settle back into…

When my youngest son, Finley, was diagnosed with Alagille syndrome, a million questions flooded my mind. I wanted to know if he’d be able…

When I brainstorm ideas for columns, I often end up focusing on similar themes, such as anxiety, stress, complications, difficulties. All those are definitely…

The last few weeks have been a roller coaster as we near the end of summer, prepare for school to start, and navigate a surgery…

My son Finley is like most other kids his age: He benefits from routine and likes knowing what to expect. He’s not a fan of…

Preparing a child for surgery is scary, as I’m being reminded. My 4-year-old son, Finley, is scheduled to have a small procedure to fix a…

Rare diseases bring a lot of unknowns to the lives of patients, caregivers, and family members. We caregivers often worry about what might be looming…

Every time I meet another family raising a child with Alagille syndrome, the topic of medication comes up. I have found that parents and…

Bedtime has been tricky in my house over the past few months. My son Finley, who was born with Alagille syndrome, just doesn’t seem…

Traveling with young kids is always a bit of a gamble. Now that my boys are 7 and 4, they’re a heck of a lot…