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."
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.