A 6-year-old girl named Kamiyah who every day experiences several spell where her entire body freezes up – her lungs, her muscles, everything.

With Kamiyah, we’re not necessarily looking for a diagnosis, as NIH ( National Inistitute of Health) has identified the gene mutation causing these spells. We’re trying to help Kamiyah and her family find more people with this condition, so they can learn about it and potentially find some relief.