To date, roughly 300 individuals have been diagnosed worldwide with KIF1A Associated Neurological Disorder (KAND). These three families have three very important things in common: their children’s diagnosis, gene variant, and location!
Written by: Krystalyn Workman, Bryce’s mom
Bryce is one of approximately 300 diagnosed with KAND (KIF1A Associated Neurological Disorder) worldwide. There are many different variants of the KIF1A gene that cause KAND. Somehow, miraculously, there are three young children with the same variant who all live within a few hours of each other in Georgia. On February 21, 2021 we were able to meet the other two families.
The feeling was incredible and exciting! We share this common bond. Families intertwined by this terrible disease. We didn’t get to have enough time to talk it all through and really share information amongst each other, but we do plan to build on these relationships and meet up again within the next few months. Although we don’t mind sharing about Bryce’s diagnosis with anyone who wants to know or is willing to listen, it was so nice to be amongst the few in the world who understand. They have been there, or are currently going through it. Our children may be a very rare few, but they are not totally alone in this and we don’t feel so alone now either.
When we got Bryce’s diagnosis, our world fell apart for a while. We had to do some research. We had to find out as much as we could about this disease. We had to find our people. This community of families that we have come to know virtually so far (thanks to the pandemic) has been life changing. We are so thankful for all of them. Hopefully all families can come together for a conference again sometime in the near future, but until then, that day was emotionally fulfilling for the soul.