Immigration Officials to Family of Ailing Children: Go Home

[Zephie]

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.

http://abcnews.go.com/Health/treatment-boys-rare-genetic-disease-cut-short-deportation/story?id=13170987

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There is also a video interview of the family at the link. It is heartwrenching.