Tedious background music drones on repeat. Or worse, a repetitive voice recording reminds you that the lines are full and your call is important. For…
Be Rare with Finn - a Column by Jay Sandstrom
ALAGILLE SYNDROME
ColumnsMy son with liver disease will once again need to take vitamins
There are many aspects of my son Finley’s journey with Alagille syndrome that I wish would stay in the past. One that stands out…
ALAGILLE SYNDROME
ColumnsMy son’s fourth birthday is yet another milestone to celebrate
Last year, I wrote about celebrating my son Finley’s third birthday. I shared about that day to show that, although Finley has Alagille syndrome,…
ALAGILLE SYNDROME
ColumnsMy son understands more about his Alagille doctor appointments
Every six months, we see our gastrointestinal (GI) team at the children’s hospital. We’re fortunate to have continued to see the same two providers we…
ALAGILLE SYNDROME
ColumnsHow I’m learning to cope with challenges as a rare disease parent
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…
ALAGILLE SYNDROME
ColumnsFielding my son’s new questions about his Alagille syndrome
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…
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…
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