Having friends to share my disease with, so we will go farther together
When I first learned that my liver was failing, I didn’t know anyone who had what I had: cirrhosis from fatty liver disease, specifically,…
Columns
Why community is important for parents of children with Alagille
I normally reserve this column for sharing stories about my son Finley, who was born with Alagille syndrome in 2021. Obviously, he deserves the…
While treatment has helped my son, the itch never entirely fades
If you spend enough time around something, you’ll start to notice it less and less. But that’s not always the case with our 4-year-old son,…
How I advocated for my brother before and after his PSC diagnosis
“I can’t explain why, but I don’t feel well,” my younger brother, Osari, said. He was 32 years old at the time. That statement was…
To test or not to test for PFIC3? Our families face the question.
The ripples of progressive familial intrahepatic cholestasis (PFIC) continue to spread throughout our family, as branches of the family tree are tested to see…
I didn’t pay attention to my health until it took a turn for the worse
Groundhog Day is probably my favorite holiday. It’s pretty noncontroversial, really. Unless you really hate winter, you probably don’t have any problems with Punxsutawney Phil…
The value of the yearly pediatrician appointment
For our family, the early months of the year are the season to visit the pediatrician. With both of my boys born in this period…
With so many specialists, scheduling appointments can be tricky
Tedious background music drones on repeat. Or worse, a repetitive voice recording reminds you that the lines are full and your call is important. For…
My son with liver disease will once again need to take vitamins
There are many aspects of my son Finley’s journey with Alagille syndrome that I wish would stay in the past. One that stands out…
My son’s fourth birthday is yet another milestone to celebrate
Last year, I wrote about celebrating my son Finley’s third birthday. I shared about that day to show that, although Finley has Alagille syndrome,…
