In Geoff’s Words:
Tell us about the person you love who was diagnosed with KS.
My daughter, Ella, is 2 years old and the motivation behind this work. She is determined, sweet, feisty, and silly. She absolutely adores her mother and tolerates her two older brothers and dad! Kidding aside, she is an absolute blessing for our family.
When did your child receive a KS diagnosis?
What resources, outlets, communities were most helpful to you at that time?
We worked with the Greenwood Genetic Center to get the diagnosis, and the team there, led by Dr. Roger Stevenson, is and was incredible. Visiting the team at Boston Children’s Hospital, and meeting Dr. Sid Srivastava, Kira Dies, and the rest of the team was incredibly motivating and hope inducing. Additionally, the KleefstraSyndrome.org Facebook page was a great find for my wife and I to establish connections with others in the KS family, and Hira with KIDS IQ has also been an unbelievable resource. For me, the unknown was challenging, but once we received the diagnosis, I had something specific to chase!
How has KS changed your life as a family?
I wouldn’t say we have changed as much as I would say we pivoted. My wife has been a special education teacher for 15 years, and my sister-in-law has Down’s Syndrome. We were built for this. This opportunity has provided me with an immense amount of purpose to change the world. Our family has focused on celebrating milestones, big or small, because our perspective has shifted to not take things for granted. We are kinder, more empathetic, and stronger. I love that my boys (4 and 6) will have inclusivity ingrained in the fabric of their being. We are embracing this journey and determined to realize positive outcomes!
What is your biggest hope for the future?
To solve the riddle and cure KS as well as intellectual disabilities as a whole that are derived from genetic disorders. I want to change the world.