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APRIL SAUL / Staff Photographer
Djamel Fathi; his wife, Zahia; and children Mohamed (left) and Imene at the Bolero Motel in Wildwood. The motel's owner has befriended the family and allows the Fathis to swim free.
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As boy faces debilitating illness, parents face deportation

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 Bala Cynwyd.

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."

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