After my wife, Dani, and I entered the world of Alagille syndrome and became advocates, we aimed to provide a view of everyday life…
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ALAGILLE SYNDROME
ColumnsWorrying about water play for our son with Alagille syndrome
Our kids love the water. When our lovely Pacific Northwest weather finally turns warm enough, they both beg to pull the inflatable pool from storage.
CHOLESTASIS
ColumnsTesting, testing, testing for a healthy child
After our daughter Eva was diagnosed with the liver disease progressive familial intrahepatic cholestasis (PFIC), we chose in vitro fertilization (IVF) with preimplantation genetic…
ALAGILLE SYNDROME
ColumnsA 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…
ALAGILLE SYNDROME
ColumnsThe 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,…
CHOLESTASIS
ColumnsOur 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…
ALAGILLE SYNDROME
ColumnsCaregivers, 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…
ALAGILLE SYNDROME
ColumnsMonitoring 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…
ALAGILLE SYNDROME
ColumnsMy 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…
ALAGILLE SYNDROME
ColumnsHow 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…
Recent Posts
- Study indicates which PBC patients may see liver function recovery
- Grappling with sudden change after a liver disease diagnosis
- New prediction tool may help identify early birth risk in women with ICP
- As our son grows, we’ll always seek opportunities to advocate for him
- HK2 protein identified as potential treatment target for MASH: Study