Parent's First Name(s): Alexandra and Denis
Parent's Last Name(s): Turmac
Mutation or Deletion: mutation
Diagnosis Date: 08/06/2025
Donate“ “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