Janie’s Beach Vision

Program: KIF1A

Janie’s Story:

Janie Desmond is in her thirties, lives with a roommate in downtown Durham, NC., and is passionate about dance, love of dogs, defending her friends, and learning really good jokes so she can share them widely.

She used to read a lot before KIF1A affected her vision, walk briskly with canes in elementary school before a manual wheelchair became more practical, and write in a nice cursive. Now, she loves playing UNO with large cards, speed swimming in Special Olympics competitions, and rolling all over town with friends in pursuit of the best coffee. Janie regularly checks in with friends near and far and mourns too many close people who have passed over the years. Janie likes discovering new interests, like improv, and new popular songs she can sing aloud. Janie also has a serious side, wanting to protest and vote to make her opinions count. Janie says that what is important to her is having friends and support systems.

She says having KIF1A (KAND) is “very annoying” but that it is really exciting that she can hopefully get treated soon. Her parents are so appreciative of Janie’s good nature, can-do spirit, resilience when she’s feeling down, and sense of humor.