Charlotte Gray was born just a few weeks before Christmas 2010 and developed at the pace of a typical baby and toddler – walking and talking, with an early passion for gymnastics, dancing and swimming. After Charlotte’s first full year of preschool, her parents noticed that she seemed to hit a plateau developmentally. In March 2015, after months of unanswered questions and tests, Charlotte was diagnosed with Batten disease (Late Infantile NCL Batten Disease CLN6). A geneticist explained that this rare neurodegenerative disorder had no treatment options or cure and would leave Charlotte blind, immobile and cognitively impaired, and ultimately, gone between the ages of 6 and 12. The Grays immediately had their younger daughter Gwenyth evaluated and tests revealed the same devastating diagnosis. Due to its rarity, solutions for this fatal disease had received minimal research, focus and funding. Kristen and Gordon’s worlds were shattered, but they were unwilling to accept “there is no cure” for an answer and created the foundation to ensure that they would be the last parents to hear that there are no options when children in the future are diagnosed with Batten disease CLN6.
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