Charlotte Gray was born December 5, 2010, filling the hearts of her parents, Kristen and Gordon, with the same joy all parents feel. She developed at the pace of a typical baby and toddler – walking and talking, with an early passion for gymnastics, dancing and swimming. However, after Charlotte’s first full year of preschool, her parents noticed she had hit a plateau developmentally. After countless questions, and seemingly as many tests, Charlotte was diagnosed in March 2015 with Late Infantile NCL Batten Disease CLN6. The diagnosing geneticist explained that this neurodegenerative brain disease was extremely rare and would leave Charlotte blind, immobile, cognitively impaired, and, ultimately, gone…somewhere between the age of 6 and 12. Their world shattered, Kristen and Gordon immediately had their younger daughter Gwenyth tested and she was given the same grim diagnosis. While Charlotte is showing early symptoms of the disease, she remains strong, with her happiness and smile still constant. However, due to the pace at which Batten disease advances, action must be taken immediately to prevent Charlotte’s progression down Batten’s debilitating path and shield Gwen, and all future children impacted by Batten disease, from its painful effects.
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