Savoring the everyday moments that bring joy to our lives
When my youngest son, Finley, was diagnosed with Alagille syndrome, a million questions flooded my mind. I wanted to know if he’d be able…
Alagille syndrome
The world spins forward as our son with Alagille advances to pre-K
When I brainstorm ideas for columns, I often end up focusing on similar themes, such as anxiety, stress, complications, difficulties. All those are definitely…
New Alagille syndrome therapy named ART4 gets FDA designations
The U.S. Food and Drug Administration (FDA) has granted orphan drug and rare pediatric disease designations to ART4, an experimental therapy for Alagille syndrome…
Facing unexpected complications after a routine surgery
The last few weeks have been a roller coaster as we near the end of summer, prepare for school to start, and navigate a surgery…
New battles royales as new medicines are added to the mix
My son Finley is like most other kids his age: He benefits from routine and likes knowing what to expect. He’s not a fan of…
Alagille syndrome symptoms vary by gene mutation, study finds
People with Alagille syndrome display different disease characteristics depending on whether the disease-causing mutation is located in the JAG1 gene or the NOTCH2 gene,…
Preparing my son with Alagille syndrome, and myself, for surgery
Preparing a child for surgery is scary, as I’m being reminded. My 4-year-old son, Finley, is scheduled to have a small procedure to fix a…
Sometimes I wonder what ‘stable’ means regarding my son’s health
Rare diseases bring a lot of unknowns to the lives of patients, caregivers, and family members. We caregivers often worry about what might be looming…
New mutation props up woman’s Alagille syndrome diagnosis
An unreported mutation in the JAG1 gene was identified as the likely cause of Alagille syndrome in a 28-year-old woman, a case report from…
My son has his own understanding of his liver disease medications
Every time I meet another family raising a child with Alagille syndrome, the topic of medication comes up. I have found that parents and…
Recent Posts
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- Savoring the everyday moments that bring joy to our lives
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- Phase 3 Trial of brelovitug for hepatitis D enrolls 1st patient
- Groups unite to fight liver disease during PBC Awareness Month