As a dad, I enjoy seeing my sons figure out what interests them. I have two boys — Jackson, 8, and Finley, 5 — and…
Be Rare with Finn - a Column by Jay Sandstrom
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…
ALAGILLE SYNDROME
ColumnsMy son’s stubborn determination will aid him in his battle with liver disease
It’s truly rewarding as a parent to see the things that make your children proud. For my 5-year-old son, Finley, it’s making his bed every…
ALAGILLE SYNDROME
ColumnsI’m grateful to make connections with the rare disease community
Being thrust into the world of rare diseases has been interesting. If you don’t have a personal connection to rare diseases, it’s easy to feel…
ALAGILLE SYNDROME
ColumnsAs our son grows, we’ll always seek opportunities to advocate for him
Lately, I’ve found it easier to settle into the flow of daily life than in previous years. Routines have developed, and the weekly rhythms now…
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