Sarah Allen, a single mom, spends her days and nights caring for her son, Aidan. Born premature with a malformed brain, Aidan, now 3, has multiple health conditions. They include cerebral palsy, epilepsy, obstructive sleep apnea and cortical visual impairment. He also has enlarged ventricles, scarring on his brain and a mild form of microcephaly. Aidan is fed through a tube 22 hours a day. He can’t sit up by himself, and gets around with help from a wheelchair. He does not speak. He has been hospitalized 18 times, usually for seizures, infections or respiratory distress, Allen says. Her son is covered by Medicaid. Though the program has covered the frequent hospital and doctor visits, Allen is fighting Medicaid over the number of hours that it will pay to cover a nurse’s visits to the home to help with caregiving. But Allen, 31, has other worries. She’s facing the prospect of being homeless this fall. And not for the first time. Allen’s situation is not much different from that of other families with medically fragile children.
ZUMA Press Launches this week: zReportage: “Medically Fragile” Photography by © Robin Rayne Nelson.