
Overview
Danelle McGuire spent 14 years searching for answers about her son Treyson Wallace’s mysterious developmental delays, which began shortly after his birth. Despite years of missed milestones, countless doctor visits and inconclusive tests, a breakthrough was discovered by whole genome sequencing through the UW Undiagnosed Disease Program. In 2023, Treyson was finally diagnosed with an extremely rare neurodevelopmental disorder caused by a mutation in the AGO1 gene, making him only the 40th known case in the world. The diagnosis brought McGuire relief and clarity, helping guide Treyson’s care and connecting the family to a rare disease community for support.
Full story
Child’s rare condition diagnosed after 14 years of searching
About this story
Date of release:
February 28, 2025
Experts in this story
Video
Interviews with Janet Legare, Bryn Webb and Danelle McGuire with b-roll of lab and home
Video Length: 29:41