What Happens When Chronically Ill Kids Grow Up

Physically disabled young adults who weren't supposed to live this long find themselves hemmed in by an unprepared heath care system

Lazo works three jobs as the family's sole source of income. A couple days a week, she works at two beauty salons and is gone from 8 a.m. to 10 p.m.

Her third job is with a company that provides workers to nursing homes, and Lazo is unsure where she'll be, or when she'll be gone, until the day before she works.

The family relies on Guevara's nurse to keep him at home. Elliot expects a ruling on Guevara's case sometime this summer, but the family risks losing the nursing hours Guevara needs.

A ruling in federal court will decide if Miguel Guevara keeps his in-home nurse.
Daniel Kramer
A ruling in federal court will decide if Miguel Guevara keeps his in-home nurse.
Guevara lost state-funded services when he turned 21. His mother, Lenny Lazo (left), works several jobs to support the family.
Photos by Daniel Kramer
Guevara lost state-funded services when he turned 21. His mother, Lenny Lazo (left), works several jobs to support the family.

If that happens, Lazo isn't sure what she would do. The thought of placing Guevara in a state institution, away from her and his brother and sister, is incomprehensible. She could not afford to quit working.

"It's to the point where she would lose the house and everything she has worked hard for," says Guevara's nurse, who asked that her name not be used. "It's kind of unfair in that sense."

Guevara knows little of the legal issues at stake. He misses the trips to Texas Children's Hospital and the physical therapist who used to come to the house.

His happiest times, he says, were during high school, and he keeps two framed photographs next to his television — one from high school graduation, the other from his senior prom, posed with a group of cheerleaders.

But he wanted to turn 21. A couple friends had promised to take Guevara to a bar, and he was excited by the possibility. He stayed awake late the night before, counting down the hours to his birthday.

Guevara had a seizure that night. His mother was home, and the seizure passed without incident. His birthday, however, was ruined.

"It doesn't mean that when he turned 21 he's going to walk again, be able to take care of himself," Lazo says. "It's not like because he's getting old, he's getting ­better."

paul.knight@houstonpress.com

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