CDKL5 is a rare, non-hereditary genetic condition resulting in early onset seizures that are incredibly difficult to control, according to the International Foundation for CDKL5 Research. Additionally Harper’s seizures were occurring up to 20 times per day. “Part of the reason [for the difficulties of CDKL5 research] is the lack of materials to study. “We shared [Harper’s story] just not even realizing the impact that this would have for thousands of people,” Penny said. There is not a single pharmaceutical drug currently on the market that can treat seizures for children with CDKL5, according to Penny.

Source: Fox News August 04, 2016 12:06 UTC