Overview
- Amber Selvey says her husband, Jason, died in 2017 from sudden cardiac failure after mild cold-like symptoms, and her son, Daniel, died six years later in similar circumstances.
- The family’s diagnoses confirmed Alagille syndrome linked to JAG1 gene mutations, which can affect the liver and heart and presents with highly variable symptoms.
- Johns Hopkins Medicine estimates the condition affects about one in 70,000 newborns, and fewer than 180 cases had been identified in the UK when the family was diagnosed.
- Two of Selvey’s other children required heart surgeries to widen arteries and repair holes, and she reports they are generally doing well.
- Selvey has joined the Alagille Society in the United States and runs a bereavement support group for parents as part of her campaign to raise awareness.