In Clark’s Words:
Tell us about the person you love who was diagnosed with KS.
Our daughter Batya, who is now 3 years old. Batya is always smiling, and in a state of beautiful, perpetual wonder.
When did your child receive a KS diagnosis?
We received Batya’s diagnosis when she was six months old, just prior to her open-heart surgery.
What resources, outlets, communities were most helpful to you at that time?
The online Kleefstra community has been incredibly supportive of my wife and me.
How has KS changed your life as a family?
More than anything, having a daughter with special needs has conditioned us to a certain depth of empathy for the human condition. This degree of empathy, I’ve found, is uncommonly present among the many other parents of children with special needs we’ve met on our journey.
What is your biggest hope for the future?
Our daughter Batya has helped us grow to truly appreciate and celebrate the small but incredibly meaningful victories of progress that often go unnoticed. In fact, she’s taught us how best to raise our two other neurotypical children — to set our ambitions for their future not based on what we wish for ourselves, or what we imagine they should become… but to provide the love and support necessary for them to develop into the very best versions of themselves.