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Heading into the new year, one thing I’ve chosen to focus on is how I cope with challenges and obstacles in life. The last few…

I knew the questions that would come from my son Finley one day. We’ve been slowly teaching him about his Alagille syndrome. At almost…

I love Christmas. What’s not to like about being with friends and family, taking winter walks, and eating too much food? My dad’s always been…

I’m fortunate that my son Finley, who was born with Alagille syndrome, has had relatively good health since his diagnosis and subsequent treatment. The…

Raising young children entails a variety of obstacles. For me, one of the most challenging is sleep regression, a temporary decline of a child’s sleep.

A few years ago I received an unexpected phone call from Birmingham Children’s Hospital here in England. Action Medical Research, a British charity working to…

Nearly all parents know that their little kids are walking germ factories. Having our boys in day care and elementary school creates all kinds of…

Raising children means daily challenges. One day they’re the sweetest kids in the world; the next, you wonder how someone so small could bring forth…

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…