I don’t exactly love any of the symptoms my son Finley experiences because of Alagille syndrome, but the dreaded itch wears on me…
Columns
ALAGILLE SYNDROME
ColumnsSwitching doctors always prompts new questions and a bit of anxiety
Looking back at our son Finley’s Alagille syndrome diagnosis at just a couple months of age, I appreciate that we were fortunate to start…
ALAGILLE SYNDROME
ColumnsUps and downs of back-to-school shopping for my son with Alagille
Even though my son Finley is still in day care, we enjoy the back-to-school shopping phase. He may not be starting a new grade, but…
CHOLESTASIS
ColumnsMy daughter’s PFIC reminds me why organ donation is important
This year, the U.K.’s National Health Service is marking the 30th anniversary of the establishment of its Organ Donor Register, which was founded to…
ALAGILLE SYNDROME
ColumnsFostering a healthy relationship with food for my son with Alagille
I’ve shared that nutrition plays a major role in the life of my 3-year-old son, Finley, who was born with Alagille syndrome. Because…
ALAGILLE SYNDROME
ColumnsCreating understanding around my son’s Alagille syndrome
Here’s a question that’s been front and center in my mind while raising a child with Alagille syndrome: How do I prepare him to…
ALAGILLE SYNDROME
ColumnsStruggling with anxiety about a change in routine for my son
Routines are foundational aspects of life with kids. Having a healthy, normal schedule helps the day flow. Kids will always throw a curveball or two,…
ALAGILLE SYNDROME
ColumnsMy son has Alagille syndrome, but it’s not his defining characteristic
When writing this column, I’ve understandably focused on the various medical complexities, situations, and emotions resulting from my son Finley’s Alagille syndrome diagnosis. I…
CHOLESTASIS
ColumnsCreating memories during our daughter’s annual trip to a specialist
It’s been a special week in our household as our daughter, Eva, started preschool. We were brimming with pride as she held her new teacher’s…
ALAGILLE SYNDROME
ColumnsFinding our way to advocacy, and through it, therapy
As someone who tends to be introverted, I saw advocacy as daunting. I had a narrow understanding of how it could look. But after my…
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