Ava

Ava, 8, is one of approximately 50 children in the world known to have SATB2-associated syndrome. It took 6 years to get her diagnosis. There is currently one doctor researching the condition. Ava is nonverbal with no functional means of communicating. She also has severe overcrowding of her teeth, poor fine motor skills, limited receptive language, and low muscle tone, especially in her face, which causes drooling. Ava’s doctors do not believe she will ever be able to speak. Despite these conditions, Ava loves riding her adaptive bike, swimming, and running, and is always smiling.