Alagille syndrome

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…

Researchers in Italy have identified 10 new mutations in the NOTCH2 gene, which has been linked to Alagille syndrome, in nine children and one…

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…

Cholestasis, where the flow of the digestive fluid bile from the liver to the intestines slows or stalls, is the most common feature across…

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…

A six-month-old baby with Alagille syndrome showed atypical biliary tract abnormalities, including a narrower main bile duct and a gallbladder with a corkscrew-like shape,…

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…