Meet Our Champions

Several months after he was born, Blake wasn’t meeting developmental milestones. He saw 16 specialists at Monroe Carell Jr. Children’s Hospital at Vanderbilt before a geneticist in the Undiagnosed Disease Network identified the cause: Saul-Wilson syndrome, an extremely rare disorder with only about 25 known cases worldwide. The condition is characterized by skeletal abnormalities, short stature, and progressive vision and hearing loss. Blake currently wears glasses and hearing aids and is already learning both sign language and braille to prepare for the future. Blake is full of energy and joy. He runs his own friendship bracelet business, plays challenger baseball, loves swimming, and enjoys math and chess - especially when trying to beat his sisters. Surrounded by a dedicated team of specialists at Monroe Carell, Blake continues to adapt and thrive, showing that nothing can stop his chatty, giggly spirit.