Sawyer Smith

Sturge-Weber syndrome is a rare, neurological disorder present at birth and characterized by a port-wine stain birthmark on the forehead and upper eyelid on one side of the face. The birthmark can vary in color from light pink to deep purple and is caused by an overabundance of capillaries (small blood vessels) around the trigeminal nerve just beneath the surface of the face.

Sturge-Weber syndrome is also accompanied by abnormal blood vessels on the brain's surface and the loss of tissue (atrophy) with deposits of calcium (calcification in the cerebral cortex of the brain on the same side as the birthmark. Sturge-Weber syndrome rarely affects other body organs.

Sawyer will have a surgery that will remove part of the left side of his brain and the remaining part will be "disconnected" to prevent further seizures. Sawyer and his family will be in Denver at the hospital for as long as one month, which will result in the loss of wages for his father. His mother quit her teaching job last year to stay home with Sawyer after his seizures started and the road to surgery began.

He will have physical and occupational therapy after the surgery and eventually speech therapy. The good news is Sawyer is so young that the right side of his brain will adapt and learn how to control all the things the left side used to do, so it is unclear what his long-term deficits will be.