Eight year old Taylor King was having difficulty in school due to poor eyesight and mathematical comprehension. Her parents took her to a series of doctors which concluded with a geneticist and a diagnoses of a rare genetic defect-Batten's Disease. The sixteen years that followed have been an incredible journey of hope and perseverance culminating in the creation of Taylor's Tale, a nonprofit foundation that promotes genetic research for rare disease and advocacy for those who are diagnosed as well as their families. Taylor's mother Sharon was instrumental in passage of Taylor's Law which helped to create the Rare Disease Advisory Council in the State of North Carolina. In the following years several more states have adopted laws for patient advocacy and created advisory councils. Millions of lives have been affected in a positive way. Taylor passed away 2 years ago at the age of 20 but her family is still seeking treatment options for Battens Disease culminating in an FDA approved clinical trial funded by the foundation named for her. I hope that you enjoy this family's remarkable story.
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