BALTIMORE _ Adrianne Woods strokes her son's forehead. The boy's long lashes drift closed, then flutter open as he shudders with a seizure.
"He's tired," Woods says of Xavier, who is almost 6 years old. "He's had a long day at school."
Nearby, Xavier's baby sister, Quinn, plays with their father, Anthony Byrd, on the floor of the family's suburban home. She rolls over, grabs at candy-colored rings and giggles.
Xavier has never rolled over, or crawled, or walked. He will never run into his parents' arms or call their names. He cannot see. That he smiles at his parents' voices and attends kindergarten is something of a miracle, his parents say.
Xavier has Schinzel-Giedion syndrome, an extremely rare disorder caused by a genetic mutation. The chances of being born with it are less than one in a million, according to Xavier's genetic counselor. The average life expectancy is two years.
"To us, he's just our son. It goes beyond special needs. It goes beyond this extremely rare disease," says Woods. "Every day with him is a gift."....
Read the full article HERE
