One thing that’s important to me as a parent raising a child with a rare genetic condition is to be able to help share the…
Be Rare with Finn - a Column by Jay Sandstrom
When you have a child with a rare genetic condition, you realize quickly that there’s no blueprint for raising their siblings. When my son Finley…
ALAGILLE SYNDROME
ColumnsA ‘graduation’ photo prompts reflection on a family’s Alagille journey
I’ve found myself reflecting a lot recently as my two boys close their current chapters in life and head into new ones. Part of what…
ALAGILLE SYNDROME
ColumnsI don’t want my son’s small size to keep him from doing what he enjoys
As a dad, I enjoy seeing my sons figure out what interests them. I have two boys — Jackson, 8, and Finley, 5 — and…
ALAGILLE SYNDROME
ColumnsAs my son prepares for kindergarten, I’m planning how to ease his worries
Until this point in time, when it has come to raising my 5-year-old son, Finley, one of the things I’ve been focused on is managing…
ALAGILLE SYNDROME
ColumnsSeeing that my son was tall enough to play was a joyful moment
One thing I have learned to appreciate about raising children is that you are often proven wrong about the things you worry about. …
ALAGILLE SYNDROME
ColumnsTaking steps to manage my son’s itch as the heat rises
Living in the Pacific Northwest, I look forward to the changing of the seasons. While I certainly enjoy aspects of the fall and winter, I…
ALAGILLE SYNDROME
ColumnsWatching my son grow and realizing he’s not defined by his rare disease
One of my favorite things about raising kids is seeing them figure out what they like doing, what sparks their interest and joy. When they…
ALAGILLE SYNDROME
ColumnsBeing brave will serve my son with Alagille syndrome well
Parenting has taught me a lot. I knew I would be teaching my kids, but I also knew I’d be learning from them along the…
ALAGILLE SYNDROME
ColumnsLearning how to let go of worry isn’t easy as an Alagille parent
I’ve been writing this column for Liver Disease News for just over two years now. When I brainstorm ideas for what to write, I love…
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