Caregivers, don’t skimp on taking care of yourself
Parenting is hard. Add in a rare genetic disease, and the stressors change. Taking…
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.
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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 advice we’ve followed, mainly on medication and proper nutrition, has supported him as he’s…
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