Join us in the Gardens on July 18, as a group of inspiring little friends of Charlotte (4 years old) & Gwenyth (2 years old) Gray have come together to create a “Lemon-Aid stand” at Roger’s Gardens to help raise funds to save these brave and precious little girls battling Batten disease. Kristen and Gordon Gray have created “The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease” to raise the estimated $10 million necessary to fund the urgent medical research to find a cure for their daughters and all future children afflicted with this devastating disease.
Every dollar counts… Be a part of the cure in helping save young lives.
Charlotte Gray was born December 5, 2010, filling the hearts of her parents, Kristen and Gordon, with immense joy and love. She developed like a typical baby, then toddler – acquiring an early passion for gymnastics, soccer, dancing and swimming. During Charlotte’s first year of preschool, her parents began to notice she had hit a developmental plateau. After countless meetings and evaluations with specialists, and seemingly endless tests, Charlotte was diagnosed in March 2015 with Late Infantile NCL Batten Disease CLN6, an extremely rare neurodegenerative brain disease. The Grays were told Charlotte was destined to become blind, immobile, cognitively impaired, and, ultimately, this insidious disease would take her life somewhere between the ages of 6 and 12.
Their world shattered, Kristen and Gordon were told to have their younger daughter Gwenyth tested, as this disease is genetically inherited. They received the devastating news that she, too, was a victim and given the same grim prognosis. 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 Gwenyth, and all future children impacted by Batten disease, from its painful effects.
Batten disease is a presently fatal, genetically inherited disorder of the nervous system that typically begins in childhood. Batten disease and other forms of NCL are rare – occurring in an estimated 2 to 4 of every 100,000 live births in the United States. However, the variant of Batten disease (CLN6) affecting Charlotte and Gwenyth is exceptionally rare. It is estimated that less than 10 children worldwide are currently living with this variant of the disease, though exact numbers are unknown. With Batten disease, genetic mutations disrupt the cells’ ability to dispose of wastes, and cells are thrown out of balance with the build-up of proteins and lipids (fats). Because of these damaged cells, patients suffer progressive neurological impairment including seizures, blindness, personality and behavior changes, dementia, and loss of motor skills. The three promising treatments being pursued to cure Late Infantile NCL Batten Disease CLN6 are: 1) Gene Therapy/Vector Virus – which has been successfully tested on one animal model;
2) Stem Cell Therapy; 3) Small Molecule Therapy.
Their mission is to save the lives of all children impacted by Batten disease, through accelerating the research for a cure. #curebatten