Aamir Khandwalla and his younger brother Hanzallah have spent the last eight years being treated for a rare, painful genetic disorder characterized by dwarfism, dislocated hips and knees, curved spines and extremely loose joints. But they face an uncertain medical future because U.S. immigration authorities say their family must return to their native Kenya by month's end.
Leaving their home in Portland, Ore., means neither youngster will get specialized care for bone deformities and weakness that make them reliant on motorized wheelchairs at school. They won't have access to cardiologists versed in the perils of dilated aortas pumping blood through abnormally small chests that can bring early death; or ophthalmologists familiar with childhood glaucoma that could rob them of their sight.
In Kenya, there is no treatment for Desbuquois syndrome, a disorder first described in 1966 by French pediatrician Georges Desbuquois. Because both boys stand only about 3.5 feet tall, and have short necks, flattened facial features and prominent eyes, going back to Kenya, where disabilities and differences aren't tolerated, would subject them to ridicule and social ostracism, their parents contend.
Aamir, 17, a high school junior, already has undergone multiple operations on his legs and spine. Hanzallah, 12, a 6th grader, only began walking in 2004, after orthopedic specialists at Shriners Hospital for Children in Portland reconstructed his hips. He complains that his knee frequently gives out, so he's prone to losing his balance and falling. That's when his parents have to carry him.
The family has few options after receiving a March 1 letter from Anne Arries Corsano, district director for U.S. Citizenship and Immigration Services in Seattle, in which she wrote that "after a thorough review," her office wouldn't extend the Khandwallas' legal stay beyond March 31. Despite documents attesting to the boys' need for ongoing care from pediatric cardiologists, pediatric orthopedic surgeons, physical therapists, ophthalmologists and a geneticist, immigration authorities apparently don't consider their medical condition urgent or their circumstances extraordinary -- criteria that could allow them to remain in this country longer on a discretionary basis.
"This decision may not be appealed," Corsano wrote.
Their mother, however, said she doesn't intend to budge: "I'm not going to leave, because my son Hanzallah is in need of surgery for his knee and he might need a spine fusion," Faiza Khandwalla, 38, said. "And next month, they have appointments."
She said Hanzallah is scheduled for a spine exam at a clinic that sees him every four months. Because the Desbuquois Syndrome is linked to glaucoma, the boys have an appointment with ophthalmologists at the Casey Eye Institute. Their mother also is awaiting new genetic test results from Kaiser Permanente, which sent samples of the boys' blood to France for special analysis.