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…
Columns
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…
ALAGILLE SYNDROME
ColumnsMedical supply ordering can be stressful for an Alagille parent
There are many hurdles that come with rare genetic conditions. One obstacle my family has struggled with recently is that the supplies we need are…
ALAGILLE SYNDROME
ColumnsWhy I sometimes feel fear of the future for my youngest son
Parenting brings many challenges, but there’s one that’s always front and center for me: keeping my sons safe and secure. As they’re 6 and 3…
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