Aubrey Cowart was born with a disease so rare, she would later be included in a case study to better understand it, identified only as “patient 12.” At the time of her diagnosis in 2016, she was one of just 15 people in the world known to have her condition: Smith-Kingsmore Syndrome.
As her parents searched for answers, they came upon one half-page article with very little information on the disease. Hoping to spread awareness and foster a sense of community, they created the hashtag #smithkingsmoresyndrome and launched a dedicated Facebook page for the diagnosed and their families and caregivers. That page now has more than 200 followers, including Dr. Laurie Smith, the physician who first described the disorder.
Categorized by macrocephaly (larger than average head), developmental delay, intellectual disability, and seizures, Smith-Kingsmore Syndrome is a challenging and draining disease. Aubrey has spent the bulk of her life in physical and occupational therapy, pushing herself beyond the point of exhaustion to achieve her goals and continue making progress. As part of her physical therapy, Aubrey came to love riding a tricycle and dreamed of having one of her own. But with unimaginably high medical expenses and a houseful of necessary equipment, purchasing an adaptive tricycle of her own seemed beyond reality.
That is until she and her family were introduced to Chive Charities. The moment we met this bright and happy 7-year-old (with the amazing head of bouncy blonde curls), we knew we had to help bring her dream to life.
That’s why we’ve partnered with Rockstar Championships during the Gold Rush event in Fort Worth, TX with the goal of raising $10,000 to fund an adaptive tricycle, home flooring renovation, and safety monitor for Aubrey. Your donation, matched dollar-for-dollar by Rockstar, will change Aubrey’s life for the better and help with her ongoing therapy and mobility. Help us keep her moving forward. Help us make her dream come true. DONATE HERE.