In the living room of his Rogers Park apartment, Syed Mujahid Jilani unbuckles the safety belt from his eight-year-old daughter’s waist and loosens the Velcro straps that hold her legs in place. Gathering her in his arms, he supports her head and neck with his upper arm as he lifts her out of the wheelchair, cradling her limp body like a newborn baby. He lays his child gently on a pillow and turns to kneel beside his wife, Abida.
“In Pakistan she would be dead,” he says grimly.
“I had a good job,” Jilani says. “I was the supervisor for three fast-food stores in Karachi–KFC, Pizza Hut, McDonald’s. It was good money for Pakistan.” He made $150 a month, a solid middle-class wage. Still, he says, just one doctor’s visit and a bottle of pills were enough to wipe out an entire month’s earnings. He got into construction and interior-design contracting to make more money. But compared to what the doctors were charging, it never seemed to be enough.
Two months later, Jilani began to worry about how much all this was costing him: the international shipping, the long-distance charges. He was anxious to see some results. Then the New York doctor wrote back with the answer to their prayers: he offered to examine Tooba. At Jilani’s request, he wrote a letter that made it possible for them to enter the U.S. for medical treatment. Jilani flew to Islamabad to get the visa, and family and friends pitched in for plane tickets and expenses. On June 26, 1999, the entire family–Jilani, Abida, Tooba, and her new baby sister, Alina–arrived in New York on a six-month temporary visa. They showed up at the medical center for Tooba’s appointment on June 29.
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After hearing Jilani’s story, a friend in Miami offered his hospitality, and the family moved on to Florida. In the following months the Mujahids visited four Miami hospitals, where initial exams, they say, were followed up only with estimates for treatment–estimates soaring into many thousands of dollars. So in October 1999 they relocated to Chicago. Jilani had heard Chicago had a low cost of living, excellent public transportation, and many hospitals. At least here, he thought, they would find a Pakistani community–a population numbering in the tens of thousands–and the language barrier wouldn’t be as much of a problem. The family moved in with a Pakistani friend who had a small two-bedroom apartment near Devon and Francisco. Jilani found spot-labor jobs around the neighborhood.
McDonough, who was there for Tooba’s very first appointment on January 2, 2001, says “she probably wouldn’t have made it much longer” if Sabzwari hadn’t brought her in when he did. Virtually overnight, Tooba became the subject of intense scrutiny by neurologists, orthopedic surgeons, and other specialists. She was diagnosed with quadriplegia, cerebral palsy, and a dislocated hip. Doctors also identified seizure disorder and dysphagia (an inability to swallow).
