Bennett Charles McClurken-Gibney

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 fluffyespecially Lucas the Spider. He had an amazing rock collection and spent endless hours sorting themhe 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 snuggleand 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. Bennett is survived by his father, Brian Gibney; mother, Kara McClurken; his sister, Ananda (who he would have done anything for); his "adopted" older siblings, Grayson Tolton and Austin Crichlow; his grandparents, Jane and Charlie Gibney of Chatham, New Jersey and Laurel and Gene McClurken of Charlottesville, Va.; aunts and uncles, Jennifer Orr, Jeff McClurken, Megen McClurken, Lynn and Anthony Morris, and Trish and Kevin Gibney; and cousins, Will, Abigail, Christopher, Mikayla, Elijah, Kate, Charlotte, Kyle, and Megan. He leaves behind his caregivers and extended family, who helped him attain independence and inclusion: Cynthia Carter who loved him like a third grandmother, his personal care attendants Val, Melissa, Morgan, Bre, Montana, Emily, Shannon, and Katie. Bennett leaves behind SO many friends and admirers of all ages, from his best friends to those he flashed a smile to on the street. We will be holding a gathering at Riverview Park in Charlottesville, Va., at 3pm on Sunday, March 4, 2018, to celebrate his life. This will not be a somber occasion. Wear sparkles. Bring your pets. Invite anyone whose life was touched by Bennett. Please bring a small stone (polished and pretty or just gravelhe really never cared) as a gift and food or drink to share with all. Bennett loved to play, but many playgrounds and parks were not accessible to himwe loved to go to the ARC Park in Richmond, an all-abilities playground, 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 abilities can gather, play, and laugh. This is a massive undertaking that will take all of us. Contributions in his memory may be made to Bennett's Village, (www.gofundme.com/bennetts-park). If you want to help make our dream a reality, email Bennettsvillage@gmail.com