Emma
Age: 10
Sibling's Name(s): Olivia
Parent's First Name(s): Cody
Parent's Last Name(s): Kofke
Mutation or Deletion: Deletion
Diagnosis Date: 04/17/2014
DonateHow did you feel when your child was first diagnosed?
Scared
What does your KdVS individual love the most?
Food, especially rice.
How does KdVS affect your child?
Small stature with learning delays.
How has KdVS affected your entire family?
We are blessed with her unique personality and cheerfulness.
What is the hardest part about having KdVS?
Not being able to be understood by everyone.
What is the hardest part about being a KdVS parent?
Not knowing what the future holds.
What would you tell newly diagnosed parents about KdVS?
The milestones will come and it’s just on the child’s time frame.
What would you tell doctors, teachers and therapists about KdVS individuals?
They are amazing to work with.
Why are you asking people to donate to the KdVS Foundation?
To further the research of KDVS in order to provide answers to parents and families.