The story of Christine

Aydriana was always considered a normal child, up until about age 8 when we noticed issues with her vision. By the end of age 9 she was considered legally blind and the only answers were to be provided via genetic testing, which resulted in a devastating diagnosis of a rare and fatal disease called Juvenile Batten Disease. We were told the brain’s impact would not stop at only her vision, but later would cause seizures, loss of speech, loss of motor skills, cognitive decline and end of life by late teens/ early twenties. To make matters worse, there is currently no available treatment or cure for this horrific disease. How does a parent of such a normal child react to such heartbreaking news? We fight back. We refuse to give up and accept that this is her fate, we continue searching for answers and supporting research and we continue to insist our voices are heard in effort to save our amazing little girl.