How we’re navigating day-to-day life with a liver disease
Raising children means daily challenges. One day they’re the sweetest kids in the world;…
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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How we navigate our son’s response to cold and flu season
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 exposure to colds, infections, and other ailments. That’s part of the deal and expected,…
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It’s hard explaining my son’s Alagille syndrome diagnosis to strangers
Before my son Finley was born, I had minimal exposure to the rare disease…
Having a great day care center makes a huge difference for our son
I feel fortunate that our 3-year-old son, Finley, has been at the same day…
How we manage the itching caused by my son’s liver disease
I don’t exactly love any of the symptoms my son Finley experiences because of…
Switching doctors always prompts new questions and a bit of anxiety
Looking back at our son Finley’s Alagille syndrome diagnosis at just a couple…
Ups and downs of back-to-school shopping for my son with Alagille
Even though my son Finley is still in day care, we enjoy the back-to-school…
Fostering a healthy relationship with food for my son with Alagille
I’ve shared that nutrition plays a major role in the life of my…
Creating understanding around my son’s Alagille syndrome
Here’s a question that’s been front and center in my mind while raising a…
Struggling with anxiety about a change in routine for my son
Routines are foundational aspects of life with kids. Having a healthy, normal schedule helps…
