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…
Be Rare with Finn - a Column by Jay Sandstrom
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…
ALAGILLE SYNDROME
ColumnsI’m learning how to let go of worry and embrace the moment
Now that my son Finley is 5, I’ve been reflecting a lot. That’s why so many of my recent columns have focused on the milestones…
ALAGILLE SYNDROME
ColumnsSupporting my oldest son, who’s growing up with a chronically ill sibling
While my “Be Rare with Finn” column focuses on my youngest son, Finley, and his journey with Alagille syndrome, Finley is not my only…
ALAGILLE SYNDROME
ColumnsKindergarten enrollment prompts reflection on our Alagille journey
Everyone always says that time flies when you are raising kids. Many have told me that one day, you blink, and they’ve gone from crawling…
ALAGILLE SYNDROME
ColumnsWho would’ve guessed a child growth chart would be my nemesis
Raising my son Finley, who was born with Alagille syndrome, has taught me to adapt to countless challenges, including new medications, unfamiliar terminology, and…
ALAGILLE SYNDROME
ColumnsCelebrating a major milestone with a 5th birthday party for the ages
One of the greatest joys of watching our son Finley grow up has been witnessing his growing appreciation for milestones and special occasions. Most recently,…
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