Columns

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…

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…

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…

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…

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…

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,…

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…

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…

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…

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…