My wife, Amy, and I live in Colorado with our daughter Natalya. I have a B.S. degree in Secondary Science Education from the University of Iowa and a M.A. degree in Curriculum and Instruction of Secondary Science from the University of Colorado – Boulder. After working approximately 10 years as an environmental chemist, I taught physics, chemistry and earth science for 20 years in Colorado until retiring from teaching in 2015.
Approximately 4 weeks after Natalya’s birth, Amy noticed that she appeared to have a seizure. Her seizure activity then ramped up in the ensuing years after that initial episode. It was about 16 years and 3 genetic tests later that Natalya was given a CDKL5 variant diagnosis. It was a relief to know what caused Natalya’s epilepsy and developmental delay but it was also evident that we were going to have a difficult road ahead of us. Fortunately, Natalya’s neurologist informed us of the Rett Clinic at the Denver Children’s Hospital which also assists parents of children with CDKL5. It was at the clinic that we were introduced to IFCR and I am humbled to be a board member of this dynamic group.
Now that Natalya has completed high school, we have found ourselves navigating a new set of obstacles. Having personally worked our way around these obstacles, one of my goals as a board member is to assist CDKL5 families during the change from adolescence to adulthood in an attempt to make this an easier transition.