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Code Red Tape

Code Red Tape
Enas (center) and Magdy Habib administer the nightly infusion of a medical solution that provides nutrients their son, Pierre.

Barely five months ago, Pierre Habib was a ghost of a child.

After he woke up with a bellyache last summer, Pierre, now 11, was diagnosed with a rare ailment that ravaged his vital organs so fast that doctors in his hometown of Cairo, Egypt, said he would live only a few more months. His photo in a local newspaper showed a pale face with deep, dark circles under the eyes.

Today Pierre, a first-grader living in Penn Hills, sports apple cheeks and shiny brown curls. The treatment he's been receiving at Children's Hospital in Oakland far surpasses what he got in his native Egypt and has restored the vibrant child inside him. In Egypt, Pierre would need to wait a year or longer for a bowel transplant to remove the gangrene, which, if untreated, would cause organ infections -- and death. Doctors also recommended that Pierre stay in the U.S. for post-transplant care, at least for a few years.

Pierre's wait has just begun. But his parents, Magdy and Enas Habib, already fear that soon enough they may not be able to provide for him -- because they were admitted into the country on a tourist visa, which doesn't allow employment. The tightening of immigration regulations in recent years has also restricted employment opportunities for them, even if they apply for a work visa.

"I'm just a father who wants to save his son," says Magdy Habib. But "I'm wondering how to stay here for three to four years without working."

As the debate over immigration reform rages, what seems to get lost in the heated rhetoric is the motivation of many of those who chose to cross the border, legally or not. For some, their lives depend on it, literally.

Prime-time TV news occasionally features foreigners who are saved by the wonders of American medicine. While that may be true, there are many more like Pierre, whose fate hinges on the country's immigration policies.

"This is a real problem," says Robert P. Deasy, a spokesman for the American Immigration Lawyers Association who practiced in Pittsburgh for 25 years. The tourist visa "does not provide for the long-term stay for a person seeking treatment."

Although the Pittsburgh region is no longer the magnet for immigrants that it was decades ago, it remains a hub for international patients seeking advanced medical care unavailable in their native countries. Last year alone, UPMC treated more than 80 patients hailing from 23 countries, according to Miriam Erukhinov, manager of the hospital's center for international patient relations.

Erukhinov says the hospital will provide the necessary documentation for visa renewals of the patients and their caretakers "as long as it's clinically needed and is verified by physicians." More often than not, however, these patients are stricken with rare conditions that require medical care long after the operation was successfully completed.

Increasingly stringent immigration laws have made it difficult, even nearly impossible, to plan for the long haul.

"We need to change the immigration law, so that people aren't caught up in this dilemma," says Valerie May, an immigration attorney with the May Law Group who is helping the Habibs pro-bono. "If [patients] had the ability to stay in the U.S. to receive medical treatment and their caretakers have the ability to work, that would be very helpful."

For now, though, there won't be much help from immigration officials.

"There is no provision under the United States immigration law for someone to immigrate to the country solely for humanitarian reasons," says Shawn Saucier, a spokesman for the U.S. Customs and Immigration Services. "We try to be generous with extending the visa for those with ill children."

F.D. came to the U.S. from China in 1996 as a sick child on a tourist visa. Thanks to treatment at UPMC, she got her health back. But her illegal status means she still can't live a full life.

At 2, doctors in Beijing diagnosed F.D. (who has asked that only her initials be used because of her immigration status) with Gaucher disease, a hereditary metabolic disorder in which harmful quantities of a fatty substance builds up in vital organs and destroys them. Her spleen failed by the time she turned 4. Doctors in China didn't know how to treat the condition, and predicted she wouldn't live past her eighth birthday.

Still, her parents would not give up on their only child. Through an American doctor her parents met in Beijing, F.D. was eventually connected to one in Pittsburgh, who had then just invented a treatment for her condition. In 1996, when she was 12, she was invited to UPMC to start receiving treatment. It works, and has granted F.D. a lease on a healthy, productive life. She finished middle and high school in the East End, and last year earned a degree in finance from Penn State. (Under the law, undocumented minors cannot be denied an education.)

But by 1999, F.D.'s visitor visa was not renewed because, she said, immigration officials found that she was planning to stay in the country for a long time for her treatment. Such intent is deemed a violation of the visa terms. Since then, she's become one of the undocumented immigrants that have so riled critics of the country's immigration laws.

"I don't choose to be here illegally," says F.D. "To be alive I have to be here."

She says she'd be happy to return to China if she could be treated at reasonable costs. Her treatment, a biweekly infusion of an artificial glucose, is currently being covered by private insurance at a monthly premium of $200.

Without insurance, it would cost close to $18,000 a month -- not something she or her working-class parents could afford. Medical insurance is nonexistent in China, and no cure to her condition is in sight.

Her illegal status, however, has meant she cannot find work and use her college education. She may not even be able to attend graduate school. She lives in Oakland with her father, who supports the family with remittances from their relatives in China and meager income from restaurant work.

Even so, F.D. remains upbeat. "It's just lucky to be alive," she says. "A lot of people in China with this disease don't have the opportunity." She also sets her hopes on the DREAM Act, an immigration bill that has languished in Congress for more than two years but was resubmitted just last month. The legislation, if passed, may grant a legal status to those who have stayed in the country illegally as minors, instead of deporting them to native countries that they barely know.

Meanwhile, the Habibs will have no trouble staying in the country legally.

But staying afloat will be difficult for the family. Pierre, his parents and his older brother, David, have been chipping away at the $500,000 donated by a Cairo philanthropist, barely enough to cover the surgery costs quoted by the UPMC before they left Egypt for what they had thought would be a six-month stay. They had booked their return for early April, planning to be home by Easter. But homecoming may not be good for Pierre's health. Habib says doctors told him that all but one child who received a bowel transplant died after returning home.

For now, the family lives rent-free at a house owned by a Lutheran church in Penn Hills. They subsist on the $300 monthly pension Magdy Habib draws from the Egyptian Army and the generosity of local people, especially those they worship with at the St. Mary's Coptic Christian Church in Ambridge, Beaver County. The daily infusion of drugs that nourishes Pierre costs $200 a shot.

Habib and his wife need to find work soon in order to support the family and fund Pierre's treatment, Habib says. Magdy Habib has a bachelor's degree in business administration; his wife worked as an accountant in Cairo. Current immigration restrictions, however, allow them to be legally employed only at universities, nonprofit agencies or research institutions.

"There are many miracles," and that has brought his family this far, says Habib. Now it seems like they're praying for just one more.

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