Network of caregivers shuttles children and families through the complex world of critical and life-ending illness
Monterey County Weekly | February 17, 2011 | By Adam Joseph
Cynthia Guzman was diagnosed with sulfite oxidase deficiency, a rare metabolic disorder, when she was only 6 days old. Doctors predicted she would die within a few months.
“We cried a lot,” says her father, Jose. “They said they weren’t going to be able to do anything.”
Seven years later, Cynthia is living in North Salinas and, according to her doctors, is the world’s longest-living sulfite oxidase deficiency patient. She can’t walk or talk, nor can she breathe, swallow or eat on her own. Someone has to keep an eye on her at all times to make sure she doesn’t suffocate on her saliva. Her team of pulmonary, neurology and gastrointestinal specialists at Lucile Packard Children’s Hospital at Stanford have no idea how long she’ll live.
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