Sonya's Story is a 501.c.3 organization created for the purpose of raising awareness and money to help find a cure for a rare genetic disorder, CDKL5. CDKL5 is a disorder resulting in but not limited to refractory epilepsy, Cortical Vision Impairment, GI issues, and Severe to profound developmental delays. Most children who are diagnosed with CDKL5 cannot walk, talk, or perform basic self help skills independently. Our goal is to help raise funds to donate to those who are working towards finding a cure for CDKL5, as well as other non-profit organizations that make an impact on terminally ill children such as those with a CDKL5 disorder.