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,…
Be Rare with Finn - a Column by Jay Sandstrom
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…
ALAGILLE SYNDROME
ColumnsMy son is learning the importance of taking his daily medication
As my kids age, I am teaching them responsibility. We talk about their duties at home, at school, and in public. Some of these come…
ALAGILLE SYNDROME
ColumnsSoaking in the season of joy is extra special this year
Raising kids is tough. Speaking for myself, as someone who often recharges with alone time, having two young boys has been a struggle at times.
ALAGILLE SYNDROME
ColumnsAn easy transition to new vitamins is a breakthrough for my son
Our son Finley is a strong-willed and determined little guy. As he approaches his fifth birthday, he’s not shy about sharing his opinions. If he…
ALAGILLE SYNDROME
ColumnsParents and son are all on a path of discovery with Alagille syndrome
Our son Finley was born with Alagille syndrome in 2021. Since then, I’ve been on a journey to learn about his rare disease and…
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