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…
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ALAGILLE SYNDROME
ColumnsOur son with Alagille syndrome is finding it hard to fall asleep
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.
CHOLESTASIS
ColumnsDoing our part to hasten a cure for our daughter’s PFIC3
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…
ALAGILLE SYNDROME
ColumnsHow we navigate our son’s response to cold and flu season
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…
ALAGILLE SYNDROME
ColumnsHow we’re navigating day-to-day life with a liver disease
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…
CHOLESTASIS
ColumnsMedical play specialists saved the day for our daughter
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…
ALAGILLE SYNDROME
ColumnsIt’s hard explaining my son’s Alagille syndrome diagnosis to strangers
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…
ALAGILLE SYNDROME
ColumnsHaving a great day care center makes a huge difference for our son
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…
ALAGILLE SYNDROME
ColumnsHow we manage the itching caused by my son’s liver disease
I don’t exactly love any of the symptoms my son Finley experiences because of Alagille syndrome, but the dreaded itch wears on me…
ALAGILLE SYNDROME
ColumnsSwitching 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…
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