My son has Alagille syndrome, but it’s not his defining characteristic
When writing this column, I’ve understandably focused on the various medical complexities, situations, and…
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.
Featured post
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,…
Read more
Finding our way to advocacy, and through it, therapy
As someone who tends to be introverted, I saw advocacy as daunting. I had…
Medical supply ordering can be stressful for an Alagille parent
There are many hurdles that come with rare genetic conditions. One obstacle my family…
Why I sometimes feel fear of the future for my youngest son
Parenting brings many challenges, but there’s one that’s always front and center for me:…
The latest obstacles we faced in getting my son’s blood drawn
After my wife, Dani, and I entered the world of Alagille syndrome and…
Worrying about water play for our son with Alagille syndrome
Our kids love the water. When our lovely Pacific Northwest weather finally turns warm…
A parent’s dilemma: How to get a child with Alagille to eat enough
Feeding small children is a daunting process for parents. Will they eat what’s been…
The Alagille syndrome symptoms in my son’s face don’t define him
When we had our two boys, my wife, Dani, and I would debate which…
Caregivers, don’t skimp on taking care of yourself
Parenting is hard. Add in a rare genetic disease, and the stressors change. Taking…
Monitoring my son’s tooth discoloration, an effect of Alagille
When our son Finley received his diagnosis of Alagille syndrome, our family began…
