March 21, 2011 -- 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.

Mother Doesn't Plan to Give Up -- Or Move

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.

Khandwalla said U.S. immigration officials' hard-line position ran counter to the compassion she and her husband Siraj had come to expect while staying in this country. "We thought that this is not humane at all. America has done so much; it has been a very good country," she said. "We don't want to be a burden on the government. We just want to be on our own. Just allow us to work, pay taxes, pay our bills and expenses and let the children be treated as long as Shriners has agreed to provide treatment."

In their time in this country, the Khandwallas have hardly been a burden. Faiza Khandwalla's parents and her husband Siraj's parents have been supporting the family, as have cousins and in-laws. Shriners Hospital, a non-profit organization, has provided the boys' medical care at no charge to the family, insurance companies or government agencies, and will do so until Aamir and Hanzallah turn 21. The hospital also donated the boys' wheelchairs. During the 12 months that immigration authorities granted the family an official extension of their visa (March 2009-March 2010), Siraj Khandwalla held down two jobs: one with a property management company and the other with a refugee organization, where he was an interpreter. He cannot work now because he's not a legal resident.

How did one family's decision to seek medical help for their special needs children in the United States bring them to the brink of deportation? Their saga began in 2003, when the Khandwallas were happily living in "a beautiful house by the ocean" in Kenya. "We didn't want to come to the United States. We had a very nice life there," Faiza Khandwalla said. However, Aamir and Hanzallah, her second and third sons, already were being bullied at school, and she was having increasing difficulties dealing at home with their physical issues. "We thought maybe Shriners would do something for them."

Relatives, Attorneys, Community Help Kenyan Family

With help from a brother-in-law living in Washington, D.C., the Khandwallas applied to have the boys seen at Shriners for what was thought to be Ehlers-Danlos Syndrome, a rare connective tissue disorder; and scoliosis, which is curvature of the spine. Khandwalla and her husband, who owned his own coir doormat business, never expected anything but a short stay on a renewable tourist visa.

However, once they arrived in Portland, months stretched into years. Ongoing medical evaluations, surgeries, bracing of weak joints and treatment from a multidisciplinary medical team at Shriners, eventually led in 2009 to a new diagnosis of Desbuquois, which is so rare that there are fewer than 50 known patients worldwide. The boys still are waiting for confirmatory genetic test results, and have begun seeing cardiologists at Doernbechers Children's Hospital and eye specialists at the Casey Eye Institute.

Although some Desbuquois patients have developmental delays, "no teachers have said there's any issue with them in school. They seem very bright," said immigration attorney Nicole Nelson, who, with her law partner Philip Smith, took the case pro bono in 2006.

Nelson became involved after several extensions of the family's visitors' visa expired. But after Corsano sent her letter earlier this month, Nelson went public with details of the boys' medical treatments and the family's immigration struggles, hoping that "maybe we could shame immigration into changing their minds," she said in an interview Friday.

So far, neither her efforts nor ongoing advocacy from the office of Sen. Ron Wyden, D-Ore., has moved immigration authorities to lengthen the family's stay. Further complicating the Khandwalla's immigration status is that 8-year-old twin sons, who were born here, are legal U.S. citizens. Schoolmates of the Khandwalla children have signed petitions to keep the family here. Those petitions, bearing hundreds of signatures, will be presented to Wyden's office, Faiza Khandalla said.

The twins, who are in second grade, are confused by recent developments, their mother said. When Corsano's letter arrived earlier this month, one of the boys asked: "What have we done? Why are they kicking us out?" his mother recalled. In addition, the immigration problems have put life in limbo for the Khandwalla's oldest child, an 18-year-old son who would like to attend college, but is "just waiting."

Nelson said she hopes immigration authorities "realize they made a mistake and change their minds." But if they go forward and initiate deportation proceedings, the case would come under the jurisdiction of Immigration and Customs Enforcement, which has the authority to stop the deportation proceedings and grant the family's request to stay longer, she said.

Mother Hopes For At Least Temporary Visa Extension

In the meantime, Faiza Khandwalla holds out hope that somehow immigration authorities will rethink their decision. "Maybe they'll try and put themselves in our shoes," she said. "Give the boys a chance to stay here, because this country has shown them hope. If they allow us to stay here and give us some legal permanent residence, it would be a really nice thing. If they don't want to do that, at least they could give us something temporary."