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…
Be Rare with Finn - a Column by Jay Sandstrom
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,…
ALAGILLE SYNDROME
ColumnsI’m grateful my son has a care team that truly cares
When you’re raising a child with a rare disease like Alagille syndrome, you become very familiar with their care team. My 5-year-old son, Finley,…
ALAGILLE SYNDROME
ColumnsIn the Alagille community, we found people who are speaking our language
I had never heard of Alagille syndrome until my son Finley was diagnosed with it. And in the five years since he was born,…
ALAGILLE SYNDROME
ColumnsA whiff of dish soap brings back memories — and medical trauma
Our brains work in fascinating ways. One moment, you are in the middle of a completely mundane task, and suddenly, you are whisked back in…
ALAGILLE SYNDROME
ColumnsMy child with Alagille syndrome is going through a ‘picky eater’ phase
When I was little, I was a picky eater. A big fan of peanut butter and jelly, I wasn’t super adventurous and didn’t really eat…
ALAGILLE SYNDROME
ColumnsThis year, my son with Alagille will hit 2 major childhood milestones
It’s challenging for me to look far into the future, as I tend to remain grounded in the present. It’s not that I don’t plan…
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