A Wisconsin mother, Danelle McGuire, spent 14 years searching for answers about her son Treyson Wallace’s developmental challenges. Born in 2009, Wallace had early health concerns, including failing a newborn hearing test and being diagnosed with clubfoot. As he grew, he continued to miss developmental milestones, prompting years of medical evaluations without a diagnosis.
In 2021, Wallace was referred to the UW Undiagnosed Disease Program, where whole genome sequencing was conducted. In 2023, doctors identified a rare mutation in the AGO1 gene, responsible for a neurodevelopmental disorder with language delay and epilepsy. Wallace is the 40th known case in the world with this condition.
The diagnosis, delivered by Dr. Bryn Webb, provided McGuire with relief and a clearer path for Wallace’s care. The discovery helped guide medical interventions and connected the family with a support community. Despite the long journey, McGuire finds comfort in knowing she did everything possible for her son’s well-being.
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