On Wednesday, February 28, 2018, the world lost some of its light. Five-year-old Bennett Charles 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 his rocks—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 Lego. 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, laugh, raise his hand, race in his wheelchair, hug, snuggle, and fill a room with smiles and joy. Bennett brought light and laughter to all who knew him. He blew through preconceived 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.
Bennett also loved to play. His power wheelchair gave him amazing independence. But local parks and playgrounds are not designed to allow folks in wheelchairs to easily play side-by-side with their peers. The closest park that was designed to include kids in wheelchairs is the PARK365 all-abilities playground in Richmond, where he could “run” around just like all the other kids. No part of that park was off limits to him or his wheelchair. We would like to create a similar park in Charlottesville in which kids, parents, and people of all ages and abilities can gather, play, and laugh. This is a massive undertaking that will take all of us. It took a village to care for Bennett, and it will take a village to build this play space. We hope you will join us.
