Columns

While my “Be Rare with Finn” column focuses on my youngest son, Finley, and his journey with Alagille syndrome, Finley is not my only…

After struggling with my health for years, mainly due to metabolic dysfunction-associated steatohepatitis (MASH), my life has taken a dramatic turn for the better.

Everyone always says that time flies when you are raising kids. Many have told me that one day, you blink, and they’ve gone from crawling…

A few years ago, I took a DNA test to learn more about my heritage and better understand the health risks that might be tucked…

Raising my son Finley, who was born with Alagille syndrome, has taught me to adapt to countless challenges, including new medications, unfamiliar terminology, and…

After I learned that my metabolic dysfunction-associated steatohepatitis (MASH) had pushed my liver to its limits, I also learned I might someday need a…

One of the greatest joys of watching our son Finley grow up has been witnessing his growing appreciation for milestones and special occasions. Most recently,…

When you’re raising a child with a rare disease like Alagille syndrome, you become very familiar with their care team. My 5-year-old son, Finley,…

When I was a kid, I was always kind of a rebel. I didn’t respond well to authority. I wanted to be as free as…

I had never heard of Alagille syndrome until my son Finley was diagnosed with it. And in the five years since he was born,…