A parent’s dilemma: How to get a child with Alagille to eat enough
Feeding small children is a daunting process for parents. Will they eat what’s been prepared? How much of a mess will they make? Are they…
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The Alagille syndrome symptoms in my son’s face don’t define him
When we had our two boys, my wife, Dani, and I would debate which of us they’d look like the most. It was a fun,…
Our journey to having a healthy child with IVF
Alongside our daughter Eva’s diagnosis of progressive familial intrahepatic cholestasis (PFIC), we learned that our future children would have a 25% chance of having…
Caregivers, don’t skimp on taking care of yourself
Parenting is hard. Add in a rare genetic disease, and the stressors change. Taking time for yourself as a caregiver is vitally important to help…
Monitoring my son’s tooth discoloration, an effect of Alagille
When our son Finley received his diagnosis of Alagille syndrome, our family began to address the steep learning curve that is understanding a rare…
My younger son’s third birthday was normal, but definitely memorable
As we advocate for our son Finley, my wife, Dani, and I aim to share our family’s daily life for other parents learning about their…
How we approached teaching our son about Alagille syndrome
Learning about Alagille syndrome has been a challenging task. My wife and I have done the research, read the studies, and combed through many…
What we wished we’d known after a diagnosis of Alagille syndrome
We received the diagnosis that our son, Finley, had Alagille syndrome when he was 4 months old. All we’d known during his first few…
Our son’s Alagille diagnosis was our introduction to rare diseases
Before having our son Finley, our exposure to the rare disease world was limited. Most people we’ve encountered since receiving his diagnosis have had the…
Why making time for doctor appointments is challenging
For me, one of the most dreaded parts of being the parent of a child with a rare genetic disorder is getting lab work done.
