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We had a breakthrough this week with our 4-year-old daughter, Eva, who has progressive familial intrahepatic cholestasis (PFIC). I think we’ve finally found the…

Before my son Finley was born, I had minimal exposure to the rare disease world. I knew about the more publicized conditions and had participated…

I feel fortunate that our 3-year-old son, Finley, has been at the same day care since he was an infant. Our older son, Jackson, bounced…

I don’t exactly love any of the symptoms my son Finley experiences because of Alagille syndrome, but the dreaded itch wears on me…

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,…