Zor is going to be 20 soon. How time flies! He is full of life, has the highest EQ of any human I have met, has a phenomenal sense of humor and is extremely gifted.  

His math skills and interest in science were apparent as soon as he could talk. His second-grade teacher had to intentionally hand him Math sheet assignments last, so that he would not be done before she had handed out the sheet to the last student and disrupt the class!! 

His total lack of inhibition and “comfort socially” got him into some trouble in elementary school!! I was used to walking into school and being told the principal wanted to see me! She did have to report Zor’s behavior to be multiple times but did not afford to discipline him, as Zor was also her assistant for many things!! If she did not have the directory at hand and needed to know the name, address or phone numbers of a student’s parents, - she just asked Zor - he had the school directory memorized a week after it came out!! Zor also knew every child’s backpack- so when there was one lying around - the principal just got Zor, and he could identify who the bag belonged to! This hobby made Zor hate Christmas break - because as he explained to me one time- too many kids got new backpacks over break, leading to new work for him!  

Zor was diagnosed with Dravet syndrome when he was about 7 years old after we were referred to Dr. Sullivan by his neurologist. He brings immense joy to many people and has so much potential but is held back by his uncontrollable seizures which come with absolutely no warning. This has led to him falling multiple times and hurting himself - he has had sutures in his head 4-5 times- accompanied by long nights in the ER and multiple MRI’s. His love and talent for rock climbing has had to be almost eliminated due to fear of a fall. 

Zor also loves science and math shows and had all Bill Nye’s videos memorized before he was 10! In addition, he shares his mom’s quest to travel (or maybe grew into it as he had no choice!) and has travelled to about 28 countries- he can’t wait for the day when the entire world will be scratched off, his scratch off map!  

The biggest blessing in Zor’s life has been Dr. Sullivan. Who is one of the kindest, most present humans I have ever met. We all hope that Zor will be eligible for genetic treatment very soon in his life. That would truly change the trajectory of his life and so mine. 

Thank you for your work Dravet Syndrome Foundation!