Brothers with rare disease may be sent back to Kenya
by: CHRISTOPHER ONSTOTT There is very little wheelchair access in Kenya, where 17-year-old Aamir Khandwalla is headed if immigration authorities have their say.

Sometimes, matters of life and death come down to nuance. Words spoken, or unspoken. An extra sentence or paragraph in a letter. Sometimes, what may appear right to a government official looking at a folder full of documents might feel very wrong to the people whose lives are held in the balance of those documents.

In two weeks, Aamir and Hanzallah Khandwalla, along with their parents and three siblings, are scheduled to be deported back to their native Kenya. Immigration officials say there is no appeal.

The family, which lives in a two-bedroom apartment near Shriners Hospital for Children in Southwest Portland, has been in the United States for eight years. It came here so that Aamir, now 17, and Hanzallah, now 11, could receive medical treatment for a rare genetic disease. In Kenya, they were told, there were no treatments available.

Aamir stands a little more than three feet tall, the result of what physicians believe is Desbuquois Syndrome. A student at Wilson High School, he has legs and a spine that have suffered curves and dislocations. Standing up straight is difficult, to say nothing of walking; he uses a wheelchair for all but the simplest of excursions.

Aamir has had three knee and leg surgeries and has undergone a spinal fusion.

Hanzallah suffers similarly. He was able to walk for the first time only after surgeons at Shriners reconstructed his hips. Eventually he, too, will likely need spinal surgery.

The boys' skeletons don't fit together right. They have known joint and bone pain all their lives. Both boys have enlarged aortas, which could someday require surgery. Both boys also appear to be victims of early glaucoma.

Surgeries at Shriners have helped and future surgeries will probably be required, according to their physicians. But those surgeries are unlikely to happen if the boys are deported at the end of March.


Tribune Photo: Christopher Onstott • Portland attorney Nicole Nelson is working free of charge in an effort to keep Hanzallah (left) and Aamir Khandwalla and their family from being sent back to Kenya. The family has until April 1 to leave the U.S.

Humanitarian gesture

When the family left Kenya eight years ago, they were told that even the most basic surgeries that Aamir would need could not be done there. Add to that the other maladies that doctors expect to befall Aamir and Hanzallah in the years ahead, and their lives in Kenya, without Western medical care, look perilous.

'It's just going to be a death sentence for these boys,' says Phillip Smith, who, along with legal partner Nicole Nelson has been providing pro bono legal services for the family. 'It just feels so basically wrong.'

The Khandwallas arrived in the United States on a renewable tourist visa, expecting they'd be here six months while Aamir received treatment at Shriners. But the boys do not suffer from a disease or a condition that can be cured. There is no wonder drug available here that is not available in Kenya. Doctors wait and observe and when new medical issues arise, they prescribe new braces or new surgery or new medicine.

In 2009, the family obtained a deferred action visa, which allowed father Mohammed Khandwalla to get a job working the front desk at a local property management firm. The Khandwallas have been supported for the past eight years by family members in Canada and back in Kenya.

Attorney Nelson says the family was right to expect they would be able to renew their deferred action visa for at least a couple more years.

'Deferred action is the wink and the nod saying, 'We're not going to go after you,' ' Nelson says.

The family found help when Oregon U.S. Sen. Ron Wyden wrote immigration officials in support of their staying, and doctors at Shriners did the same.

Yet, two and a half weeks ago U.S. authorities sent a letter telling the Khandwallas they would have to leave the country by the end of the month. The letter offered no explanation for the decision.

Tom Towslee, Wyden's communications director in Oregon, says a staff member has been in contact with immigration officials on the family's behalf for years.

'It's beyond comprehension as to why they would do this,' Towslee says. 'They've been here for eight years, they're not getting public assistance, they're not a burden on society. They want the best medical care available for their children and so do we. And they're going to get that here and not in Kenya.'

But getting the best medical care in and of itself is not a reason to allow the Khandwallas to stay, immigration authorities say.

Sharon Rummery, spokeswoman for U.S. Citizenship and Immigration Services, says the Khandwalla boys are not facing a matter of life and death.

'We're not seeing an urgent situation here,' Rummery says. 'They are children who go to school every day.'

That wink and nod of deferred action, Rummery says, comes with a definition.

'This is a humanitarian gesture that's entirely discretionary and very rarely used,' she says.


Tribune Photo: Christopher Onstott • Hanzallah Khandwalla (above) and his brother Aamir have the rare genetic disorder Desbuquois Syndrome shared by only a few dozen people in the world. Immigration authorities have decided to send the family home to Kenya, where they will not be able to receive specialized care.

'Here I have dreams'

The nuance of the case lies in letters written by doctors and Shriners staff on behalf of the Khandwalla boys. Immigration officials appear to be placing more emphasis on the section of the letter from Shriners that describes how the hospital will treat Aamir and Hanzalla if they remain in the country. The letter says Shriners will continue to see the boys every six months to monitor their health, and that there are no scheduled surgeries.

The family would prefer that immigration officials consider this section of a letter written by Shriners orthopedic surgeon Dennis Roy: 'Continued treatment at a specialized children's hospital is indicated. … Without this management their underlying condition could lead to adverse health outcomes as well as adverse functional outcomes.'

The letter from Kathie Ramos, Shriners outside services coordinator, can be read as supportive or not, depending on which part of the letter is emphasized, and what the reader is looking to defend.

One part reads: 'Only symptomatic treatment is available for Desbuquois Syndrome.' It explains that Shriners' physicians focus on managing symptoms and preventing further injury to the boys.

But later, in the same letter, Ramos writes: 'Not only would they need an experienced pediatric orthopedic surgeon, a pediatric physical therapist, pediatric ophthalmologist, pediatric cardiologist, a geneticist and an orthotist, but they would also need to be followed by a physician familiar with Desbuquois Syndrome.'

There are reportedly fewer than 50 known cases of Desbuquois Syndrome worldwide. The Khandwallas say they are certain they will not have access to any of those specialists in Kenya.


The Khandwallas say that come April 1 they expect to still be in Portland. They aren't leaving without a continued fight.

'In the middle of treatment how can we leave?' asks mother Faiza Khandwalla.

Since they moved here, the Khandwallas have added two other children to their family, and those two are legal U.S. citizens. Shriners has offered to treat Aamir and Hanzalla free of charge until they are 21. The local Muslim community has come forward with all sorts of support, including offers of food and house furnishings.

Nelson, an immigration attorney for 14 years, says she is willing to continue fighting the case without compensation indefinitely.

'I've never had a case where the family has done absolutely everything right. They came with visas and applied for extensions and tried to do everything possible to stay in good status, and then to have it denied, no, I've never had it happen to a family with this type of need,' she says.

Aamir, whose primary interest is computer programming, holds out hope that he will stay here. He says he remembers well enough the teasing and taunts he endured in Kenya, and the fact that he was unable to attend school there when he was young because there were no accommodations available for a child with special needs. Here, he says, he has never been treated cruelly.

'There is no life there,' Aamir says of Kenya. 'Here, I have dreams and hopes (of things) that I want to do after high school and college. There, I can't learn anything. My life is worthless over there.'

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