A rare genetic disorder called CACNA1E affects only about 150 people worldwide. One of them is a 1-year-old girl whose family is working to raise awareness about the condition. They face challenges in finding treatment due to a lack of awareness. The family's story was previously reported, and they are now advocating for more research and treatment options.

The girl's mother is responsible for administering her medication, which includes crushing and mixing certain pills with water. Further details about the family's experience and their efforts to raise awareness are available.

The family's advocacy efforts coincide with CACNA1E Awareness Day, highlighting the importance of research and treatment for this ultra-rare condition.