Be Rare with Finn — Jay Sandstrom

Jay Sandstrom and his wife, Dani, have two children, Jackson and Finley. Finley was diagnosed with Alagille syndrome as an infant. Since that moment, Jay and Dani have worked to spread awareness about Alagille syndrome and provide a resource for newly diagnosed families that they wish they’d had access to. Through his column, “Be Rare with Finn,” Jay hopes to show that while being a caregiver for a child with a rare genetic disease comes with its challenges, it also brings many opportunities for celebration. Jay aims to provide a glimpse into what living with Alagille syndrome looks like for his son Finley and their family.

My son is learning the importance of taking his daily medication

As my kids age, I am teaching them responsibility. We talk about their duties at home, at school, and in public. Some of these come naturally, while others require teaching moments. While Finley, my 4-year-old son who was born with Alagille syndrome, learns about the expectations for him at…

ALAGILLE SYNDROME

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How I’m learning to cope with challenges as a rare disease parent

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…

ALAGILLE SYNDROME

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Fielding my son’s new questions about his Alagille syndrome

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…

ALAGILLE SYNDROME

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Everyday vigilance is part of raising a child with Alagille syndrome

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…

ALAGILLE SYNDROME

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Our son with Alagille syndrome is finding it hard to fall asleep

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.

ALAGILLE SYNDROME

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