Here’s a staggering statistic: only 5 percent of rare diseases have approved treatments. But that doesn’t mean there isn’t extensive work and research being done to find therapies, procedures, and eventually, cures for these conditions.

On September 14, 2018 my healthy seven-month-old baby had her first seizure. It was scary. Really, really scary. It was hard to believe that this was really happening to us. After a lot of tests and tears, it became clear that this was not a one-time seizure.