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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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,…
When I was a kid, I was always kind of a rebel. I didn’t respond well to authority. I wanted to be as free as…
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,…
FATTY LIVER DISEASE
ColumnsWhile you were asleep: Nighttime may affect your liver more than you think
A few years ago, I bought myself a fitness watch. As I worked to rebuild my health after being diagnosed with metabolic dysfunction-associated steatohepatitis…
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…
FATTY LIVER DISEASE
ColumnsGetting ahead of concerns about fatty liver disease in children
Growing up, I was very much a daddy’s girl. My dad had a lively personality that helped him make instant friends wherever he went, sometimes…
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…
FATTY LIVER DISEASE
ColumnsThink smoking only affects your lungs? Your liver would like a word.
When a new year rolls around, many of us naturally turn our attention to health. I’ve made enough resolutions over the years to know that…
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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