Switching 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
Ups 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…
New NOTCH2 gene mutations identified as likely Alagille cause
Researchers in Italy have identified 10 new mutations in the NOTCH2 gene, which has been linked to Alagille syndrome, in nine children and one…
Fostering 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…
Creating 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…
Liver disorder most common Alagille symptom in children
Cholestasis, where the flow of the digestive fluid bile from the liver to the intestines slows or stalls, is the most common feature across…
Struggling 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,…
My 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…
Atypical biliary tract abnormalities found in Alagille syndrome baby
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,…
Finding 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…
