by Cesca Janece Waterfield
To the severely disabled, the world can be astonishingly small. For nearly 15 years, Shareen Young-Chavez had gotten to know a female classmate of her son Stefon, who suffers from a neuro-genetic disorder. The children grew up together as Shareen took him to classrooms and events he shared with his friend. Last July, Shareen attended the girl’s funeral. She was 17.
“They die in wait,” Shareen says. “She died waiting on services she needed.”
Stefon has Angelman Syndrome, a disorder often misdiagnosed as cerebral palsy. For the 16 year-old, the disease results in a complex array of intellectual and physical ailments. His medications can cost $2,000 a month. He’s had ten surgeries and been hospitalized so many times, Shareen has lost count.