Arc of the Piedmont

About this campaign

On Wednesday, February 28, 2018, the world lost some of its light. Five year old Bennett McClurken-Gibney died in Charlottesville, Virginia, held by his mommy and daddy who loved him with all their hearts. Bennett was a lover of Pokemon, Voltron, My Little Pony, and all things cute and fluffy, especially “Lucas the Spider”. He had an amazing rock collection and spent endless hours sorting them–he knew every single one by its color, shape, and size. He loved pushing Fall leaves with his wheelchair and racing down the halls of his school, Johnson Elementary. He adored his big sister as they shared snuggles, disco bath parties, racing, riddles, and Legos. He had an amazing capacity for joy (and mischief) that was infectious and far exceeded the limits of his body. Against all odds, he led a full, joyous, active life. As Bennett turned one, he was diagnosed with Spinal Muscular Atrophy type I, a genetic disorder that causes muscular weakness. At the time of his diagnosis, few children with SMA type 1 survived past the age of two. With the loving care of his family, friends, and medical team, he was able to sing and laugh, raise his hand, race in his wheelchair, hug and snuggle and fill a room with smiles and joy. Bennett brought light and laughter to all who knew him. He blew through pre-conceived notions of disability with a smile and a twinkle in his eye. He was a shameless flirt, a caring friend, and an example of the amazing things people can be. Bennett made the world and all who knew him better by his boundless light.