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…
Be Rare with Finn - a Column by Jay Sandstrom
ALAGILLE SYNDROME
ColumnsEveryday vigilance is part of raising a child with Alagille syndrome
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…
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.
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…
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…
ALAGILLE SYNDROME
ColumnsUps 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…
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