February 2020
"Our NBIA story began with a BPAN diagnosis for our oldest son, Everett in 2013. Everett was not meeting his developmental milestones and eventually started having physical signs of complex seizure disorder. For more than two years we thought Everett was only ten in the whole world with this diagnosis. This isolation changed when I came across the post from a mom on a seizure disorder support group. Her daughter also has BPAN. She directed us to the researchers of NBIA. Since then we have been able to meet other families whom empathize with our normal daily lives. We continue to fight for Everett's ability to hold onto the progress/gains he makes. They are small but always wildly celebrated.
Currently Everett is in 2nd grade and is the oldest of three boys. He most recently scored a (highest possible) passing grade on a math assessment using his TOBII Eyegaze communication device and multiple-choice style testing. BPAN now has hundreds of diagnosed individuals around the world. We may know little about BPAN, as it was only discovered as a syndrome after Everett's birth, but we hope to help the future Everett's of the world get these answers, all while enjoying most of the miracle of Everett's life."
