The Interact Club of Neshaminy High School is holding an event this Saturday to help raise money for an extremely unique disease that has effected one of the district’s students.
The “Color Fest,” which will be held between 11:30 a.m. and 3:30 p.m. outside the high school, is to benefit the Glut1DS Foundation. Gltu1DS, an extremely rare disease, has affected a second grader at Herbert Hoover Elementary School.
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Participants must pay a $20 registration fee, but will receive an official Color Fest t-shirt, an “I love someone with Glut1DS” bracelet, and one packet of color to use in the ‘color zone’.
The second grader named Gracie, who is only the 86th person ever diagnosed with the disease, was first diagnosed at 22 months old and has been fighting symptoms of the disease ever since. Before being diagnosed, Gracie started having myoclonic jerks at only two months old, where she suffered from hundreds of daily seizures, low muscle tone and even developmental delays.
Gracie, the science and music loving eight year old, who has had her hand at tons of different medications for her seizures, remained seizure free for nearly four years before recently suffering from them again. According to her fundraising page, Gracie hopes to raise money not only to help herself but the 500 others diagnosed with Glut1.
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Her family, which recently set out to raise $4,000, has already raised over $7,000.
