Community · Families
Toby's Story
School Age
“Ten words, forty signs, and a heart full of determination. That is Toby.”
Toby was born in 2015 at 37 weeks, weighing 3 pounds 15 ounces — small but mighty. His family's journey from Scotland to Texas brought him to the medical team that would identify his ZTTK diagnosis in November 2016.
Since then, Toby has undergone multiple surgeries for heart defects, craniosynostosis, ureter repair, hypospadias, ear tubes, and adenoid removal. He wears a protective helmet and attends a Life Skills class where he thrives.
Toby communicates with approximately ten spoken words and forty signs — a vocabulary that grows steadily as he does. His family celebrates every new word, every new sign, as the milestone it truly is.
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