A 1-year-old girl has an ultra-rare genetic disorder called CACNA1E, a condition that affects only about 150 people worldwide. Her family is fighting for treatment and awareness, citing a lack of awareness as a major obstacle in finding care. The family's efforts to secure treatment have been challenging, with concerns about insurance coverage at one point.

The girl's family is now working to raise awareness about the importance of research and treatment for CACNA1E. They are highlighting the need for support on CACNA1E Awareness Day. Further details about the family's story and their efforts to raise awareness are available.