As someone who tends to be introverted, I saw advocacy as daunting. I had a narrow understanding of how it could look. But after my…
Columns
ALAGILLE SYNDROME
ColumnsMedical supply ordering can be stressful for an Alagille parent
There are many hurdles that come with rare genetic conditions. One obstacle my family has struggled with recently is that the supplies we need are…
ALAGILLE SYNDROME
ColumnsWhy I sometimes feel fear of the future for my youngest son
Parenting brings many challenges, but there’s one that’s always front and center for me: keeping my sons safe and secure. As they’re 6 and 3…
ALAGILLE SYNDROME
ColumnsThe latest obstacles we faced in getting my son’s blood drawn
After my wife, Dani, and I entered the world of Alagille syndrome and became advocates, we aimed to provide a view of everyday life…
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…
Recent Posts
- Genetic analysis unveils 3 potentially key treatment targets for PSC
- Getting ahead of concerns about fatty liver disease in children
- Early trial results testing maralixibat for hard-to-treat itching due by year’s end
- My child with Alagille syndrome is going through a ‘picky eater’ phase
- Biliary atresia treatment AX-0810 faring well in early testing