Navigating the unknowns after a diagnosis of PFIC
One difficult thing about a rare disease is that there are so many unknowns, and it’s not always obvious where the answers can be found.
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Shoe shopping for a child with Alagille was surprisingly difficult
I love shoes. Shoe collecting has been a hobby of mine for quite some time. A good pair of sneakers or boots can take your…
Our son’s smaller size from Alagille syndrome creates obstacles
There are several words I’d use to describe my 3-year-old son, Finley. My wife, Dani, started a tradition for our two boys where each night…
Hearing the haunting words ‘failure to thrive’ to describe your baby
Feeding your newborn child can be stressful. There are so few things they can control in their young lives. It’s common for children to learn…
My son’s itchiness was a difficult Alagille symptom to monitor
There are many terms I had never heard prior to having a child with Alagille syndrome. One of them was cholestatic pruritus, otherwise…
Itching and scratching our way to a PFIC diagnosis
My childhood neighbor was a university lecturer. One of my earlier memories of her is when she told me, “Sophie, you aren’t nosy. You’re inquisitive,…
Drafting our elevator pitch for explaining Alagille syndrome
Having a newborn baby is an exciting time. If you need to go out in public, there is no hiding a newborn. They’re like a…
The journey to my newborn son’s diagnosis of Alagille syndrome
Before my son Finley was born in 2021, I had never heard of Alagille syndrome. For that matter, I had only surface-level knowledge of…
