In 2021, our daughter Frances Gourley was diagnosed with a one in a billion genetic disease called DHDDS. At age 14, Frances has already begun to experience acute symptoms that will progressively worsen. She suffers from epilepsy, full body tremors, lack of muscle control in her arms and legs, photosensitivity, migraine, nausea, and confusion. We are heartbroken and terrified as we watch our beautiful daughter's decline.