Zayin

Parent's First Name(s): Alexandra and Denis

Parent's Last Name(s): Turmac

Mutation or Deletion: mutation

Diagnosis Date: 08/06/2025

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“The doctors said I couldn’t, so I keep proving them otherwise.”

How did you feel when your child was first diagnosed?

relief.. we finally knew what was going on

What does your KdVS individual love the most?

stroller walks, his toys and baths

How does KdVS affect your child?

craniosynostosis (successfully operated), acc, other brain abomalies, a small heart defect, muscle hypotonia and global delays