Be Rare with Finn - a Column by Jay Sandstrom

There are many aspects of my son Finley’s journey with Alagille syndrome that I wish would stay in the past. One that stands out…

Last year, I wrote about celebrating my son Finley’s third birthday. I shared about that day to show that, although Finley has Alagille syndrome,…

Every six months, we see our gastrointestinal (GI) team at the children’s hospital. We’re fortunate to have continued to see the same two providers we…

Heading into the new year, one thing I’ve chosen to focus on is how I cope with challenges and obstacles in life. The last few…

I knew the questions that would come from my son Finley one day. We’ve been slowly teaching him about his Alagille syndrome. At almost…

I’m fortunate that my son Finley, who was born with Alagille syndrome, has had relatively good health since his diagnosis and subsequent treatment. The…

Raising young children entails a variety of obstacles. For me, one of the most challenging is sleep regression, a temporary decline of a child’s sleep.

Nearly all parents know that their little kids are walking germ factories. Having our boys in day care and elementary school creates all kinds of…

Raising children means daily challenges. One day they’re the sweetest kids in the world; the next, you wonder how someone so small could bring forth…

Before my son Finley was born, I had minimal exposure to the rare disease world. I knew about the more publicized conditions and had participated…