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Inquirer Thanksgiving Day 2009 Edition

As boy faces debilitating illness, parents face deportation

By Michael Matza
Inquirer Staff Writer

The disease likely to put 8-year-old Mohamed Ali Fathi in a wheelchair by his teens and end his life by 25 is in an early stage. When he runs, he falters. When he climbs stairs, he must press his palms against his thighs for extra lift.

Doctors at Children's Hospital of Philadelphia diagnosed him last year with Duchenne muscular dystrophy, a genetic disease in which muscles progressively weaken. They say Mohamed is a potential candidate for forthcoming trials of an experimental treatment.

His future, though, is clouded by more than Duchenne's.

The boy is a U.S. citizen, born and raised in South Jersey. But just four months before his birth, his parents entered the country illegally. Now they face imminent deportation to their homeland, Algeria.

Djamel and Zahia Fathi used forged passports, then dropped the ruse once here, applied for asylum within the year, and were rejected. By stepping forward, they became a blip on the government's radar for eventual deportation.

U.S. Immigration and Customs Enforcement (ICE), which handles removals, does not keep data on illegal immigrants who give birth here, or the fate of children whose parents are forced to leave. Nonetheless, the agency acknowledges the dilemma.

"Having a U.S.-citizen child alone will not stop a removal," said Mark Medvesky, an ICE spokesman. "But we are aware of the issues it raises when we go into proceedings, and we try to be as sensitive as we can. . . . If someone has family members they can leave their children with, that's up to them."

The subject raises temperatures on all sides of the immigration debate.

"The parents themselves are not children - they knew what they were doing," said Mark Krikorian, president of the Center for Immigration Studies, a Washington nonprofit that advocates limiting immigration. "Whatever their objective was in coming here, they put their children in this situation."

The Fathis' supporters - lawyers, doctors, friends - have asked ICE to defer a deportation order so "Lil' Mo" can continue getting the care not available in Algeria.

"At this point, we are hoping [immigration officials] will exercise their discretion, and a little mercy, so the family can stay while Mohamed undergoes treatment," said their lawyer, John Vandenberg of Philadelphia.

At the moment, the Fathis, who live in North Wildwood, are scheduled to meet with immigration officials in Newark, N.J., on Dec. 8, when they must present travel documents proving they will leave the country by the end of March. Mohamed and his sisters, 5-year-old Imene and 6-week-old Laila, could remain here, but that would be impractical, supporters say.

"Should his parents get deported, Mohamed will go with them, and this will . . . significantly decrease the quality of his already short life," Hassan Salah, a Bridgeton, N.J., pediatrician, wrote in a Nov. 10 evaluation of Mohamed.

His condition demands "geneticists, pulmonologists, neurologists, metabolic disorder specialists, and physical and occupational therapists," Salah added. "To find doctors in Algeria who practice, and practice well, in all these specialties will be impossible."

Alan Tuttle, a Children's Hospital social worker assigned to Mohamed's case, said Duchenne's is "devastating" for every family, and the impending deportation compounds the stress.

"Leave Mohamed here? Or stay together as a family and leave the country? It's a horrible choice," he said. "Seems to me there ought to be some way to find a solution. Whatever the government's policies are on immigration, they should be flexible enough to meet these life-challenging, life-threatening issues."

Harvard Law School professor Deborah Anker is the author of Law of Asylum in the United States, widely recognized as the definitive textbook on the subject.

The Fathi case is "incredibly compelling," she said. "This child has a right to be with the parents and the right to have as much life as he can possibly have." Deporting the parents "is penalizing the child. It's unconscionable."

Krikorian, the limited-immigration advocate, sees a family who "cheated and are now demanding a benefit."

"I have a lot of sympathy for the kids," he said. "I have no sympathy for the parents. They've got to go back."

Fleeing danger

From 1992 to 1998, about 100,000 Algerians were killed in fighting between their government and Islamic Salvation Front rebels, according to U.S. intelligence reports.

In 1999, Djamel Fathi, a large-animal veterinarian, and his wife fled out of fear they would lose their lives, too, they say.

"I was in danger in my country," Djamel, now 38 and working as a veterinary technician, said in a recent interview at his rented house.

He described being hauled off a bus by armed rebels at a remote checkpoint, held for three hours, and threatened because he was a college student; the fundamentalist insurgents had demanded a boycott of Algeria's universities. He fast-talked his way out of trouble that time, but the rebels waylaid him again.

He was inoculating sheep in the mountains, he recounted, when gunmen appeared and demanded that he treat a wounded comrade. He pleaded he was "just an animal doctor," carrying only syringes.

The rebels told him to go immediately to his office and return with medical instruments, warning that "if you report us to the gendarmes or don't come back," Fathi recalled, "you are a dead man."

Fleeing to his parents' house in Algiers, he began planning how to escape the country. His office, he would later learn, was ransacked.

In January 2001, the Fathis entered France as tourists. Zahia was pregnant with Mohamed.

At the U.S. embassy in Paris, they sought visas to America, but were denied. Though not given a reason, Fathi said officials might have suspected they were trying to emigrate. And they were - desperate to reach New Jersey, where Zahia's brother is a naturalized citizen.

So they bought fake French passports under the names Abdellah and Aicha Nedjar and flew via Amsterdam to Newark in April 2001.

Four months later, Mohamed was born.

Six months after that, they applied for asylum under their real identities, as Algerians fleeing persecution and the threat of death.

An immigration judge turned them down, saying Djamel Fathi's experiences did not constitute asylum-worthy persecution as defined by law. They appealed, and lost.

As their case has wended its way through the system and now enters what looks like the endgame, current and former neighbors are rallying to their cause.

"It would be inhumane to force this family to leave," James J. Eisenhower wrote in a letter sent last month to Sen. Robert Menendez (D., N.J.) and other officials.

Eisenhower and his wife, Dolores, both retired businesspeople, met the Fathis eight years ago when Djamel was hired as a maintenance man at their North Wildwood retirement community. More than two dozen other residents also sent letters.

"They are the essence of what a family should be," wrote Bonnie McNamara, 66, retired from a computer firm. "Their deportation would be a loss to America."

Olga Alvarez, a spokeswoman for Menendez, said he forwarded documents from the Fathis and their supporters to federal immigration authorities, asking them to "please look into the matter."

Meanwhile, the Fathis have had to check in monthly at the ICE office. It was at their September meeting that they were told they were not eligible for "relief from removal" and would have to depart.

Pat Furlong, president of the support group Parent Project Muscular Dystrophy, knows the legal arguments for deporting the family. As the mother of two boys who died of Duchenne's a year apart in the 1990s, she also knows the argument for letting them stay.

"I do know they would get more days with their son here than they would in Algeria," she said. "And I tell you, I'd do what I have to do to get those days."

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