Community · Families
Vincent's Story
School Age
“The MRI showed what we could not see. But every day, Vincent shows us what no scan can capture.”
Vincent was born on May 16, 2017, weighing 5 pounds 6 ounces. From the beginning, his family noticed moderate-to-severe hearing loss, a sacral dimple, undescended testes, low-set ears, a horseshoe kidney, and low muscle tone — a collection of findings that pointed toward something genetic.
An MRI revealed extensive white matter volume loss, providing a clearer picture of how ZTTK affects brain development. For Vincent's family in Victoria, Australia, this knowledge has been both challenging and empowering — helping them advocate more effectively for the support he needs.
Vincent continues to grow and develop in his own time, surrounded by a family that sees him for all that he is, not just what the scans show.
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