PHILADELPHIA — At age 5, Kevin Marín doesn’t speak.

He needs help to eat, hearing aids and support from orthotic devices to help with walking.

Besides having severe autism, Kevin has a rare disorder called agenesis of corpus callosum, in which the fibers that connect the two hemispheres of the brain are either missing or only partially intact.

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He and his older brother, 12-year-old Luis, who has his own myriad health problems, see neurologists, pediatricians, orthopedists and physical therapists about 20 times a month.

Only the intricate, advanced care of the American medical and therapeutic systems — and the devotion of their undocumented immigrant parents — enables Kevin and Luis, both American citizens, to live semblances of normal lives.

Now, a Trump administration policy change threatens to drive the family out of the United States to a country that lacks crucial medical and social supports for the boys.

“What do you think our children will suffer out there?” asked their father, Pedro Marín Álvarez. “In places with more crime and less education than here?”

Álvarez, 32, crossed the border from Mexico in 2003, while Velveth Román Girón, 36, came here from Guatemala in 2005. Both their children were born in America.

They say they are not asking for citizenship, or permanent residency, or any special status — only the ability to stay and care for their sons, a challenging, round-the-clock endeavor. Technically, only the parents are at risk of removal, since the boys are U.S. citizens, but it’s unclear how the children could survive without the support and advocacy of their mother and father.

“I don’t need privileges,” Román Girón said. “I just need my children to have me, and that I can guarantee their rights as citizens of this country. … We are people who fight for our children.”

In mid-August, with no public notice, U.S. Customs and Immigration Services (USCIS) ended what’s called medical deferred action, a small, humanitarian program that the government has run for decades. It allows undocumented families to live and work in this country while fighting serious or life-threatening illnesses, including cancer, leukemia and cystic fibrosis.

The government gets about 1,000 requests a year for deferred action, which grants no immigration status but shields families from removal by U.S. Immigration and Customs Enforcement (ICE).

USCIS mailed letters informing families the agency would no longer consider deferrals for those with dire medical conditions.

“As such, your request for deferred action has been denied,” the letters said. “You are not authorized to remain in the United States.”

Families were told they had 33 days to leave the country or face deportation proceedings.

Amid public outcry, the Trump administration partly amended the policy, but not in a way that protects families like the Maríns, who live in Lancaster. Their deferred-action status expires 11 months from now.

“It’s really inhumane to go after vulnerable, sick children who are already in the United States seeking medical treatment,” said Conshohocken immigration attorney Audrey Allen, who represents the Maríns and other families in the same situation. “It really is a death sentence to send them back, to a third-world country or a country that can’t provide the level of resources.”

The ACLU of Massachusetts and other civil rights groups are suing to restore deferred action and protect people who are receiving care, including a 10-year-old girl with eye cancer and an 18-year-old with burns over 70 percent of his body.

“This is a new low, even for Donald Trump,” Sen. Ed Markey, D-Mass., said in a conference call with reporters. “This administration is now deporting kids with cancer.”

USCIS subsequently said ICE would decide deferred-action cases — which ICE promptly rejected, saying the agency would not take over that duty. On Sept. 3, USCIS announced it would “complete the caseload” of deferred-action cases that were pending on Aug. 7, which left many families with no way to obtain or renew deferments.

“Deportation in this situation is a death sentence, and we should not mince words about that,” said Rep. Ayanna Pressley, a Democrat from Massachusetts, where at least 20 children are receiving lifesaving treatment.

Philadelphia also has multiple cases, perhaps because of the quality care at St. Christopher’s Hospital for Children and Children’s Hospital of Philadelphia.

At a congressional hearing in Washington last week, USCIS officials frustrated lawmakers by refusing to answer questions, citing ongoing litigation.

“You can’t tell me why there’s a new policy, you can’t tell me what motivated the new policy and you can’t tell me what the new policy is,” said Rep. Jamie Raskin of Maryland, the Democratic chairman of the House Oversight Civil Rights and Civil Liberties subcommittee.

“That is my testimony, sir, yes,” responded Daniel Renaud, associate director of USCIS Field Operations Directorate.

The Marín family first applied for deferred action in 2017; it expires Aug. 1, 2020.

For the parents, life is a division of labor focused on their children.

Marín Álvarez works 13 hours a day, six days a week, in a pizzeria. He earns money while his wife concentrates on the boys. She’s the organizer, the one who carries the important papers and keeps track of appointments and medical records.

Both boys are in school, where they get occupational therapy, speech therapy and special classes for children with autism. Additionally, at home, they receive therapy from the Center for Autism and Developmental Disabilities three times a week.

Román Girón said they are grateful for the work of the doctors and therapists. She and her husband see their children making progress. Luis understands English and Spanish, even if he doesn’t speak in response.

They said they accept only the federal assistance to which their children are entitled as citizens, such as Supplemental Security Income, to help pay for orthopedic shoes and hearing aids, and Medicaid, which assists in doctor visits and hospital stays.

“We do not want to be what the president has always said we are, to be a ‘burden to the country,'” Marín Álvarez said. “Because we are not and do not intend to be.”

An estimated one billion people worldwide have some form of disability, 140 million of them in the Latin American and Caribbean regions — nearly 15 percent of the total. But less than 3 percent of those have access to rehabilitation services, according to U.N. reports.

To be forced to go to Mexico or Guatemala, the couple said, would be devastating for their children.

The Mexican health-care system is sorely underfunded, and people with mental or physical disabilities are pushed to the margins of society, seen as having less-worthy lives, studies show.

The situation is similar in Guatemala, where two years ago a member of parliament declared, “Disabled people only constitute an expense for the country.”

People with disabilities suffer the greatest discrimination and poverty in that country, with only 15 percent having any income and 2 percent holding formal jobs, a 2016 U.N. study found.

The Maríns insist their children will contribute to society in this country.

They hope that one day, Kevin will give speeches, with the help of an electronic voice system. And that Luis, who loves technology, could be involved with computer systems.

They want their children to become able to talk, they said, so they can tell people what America did for them.

© 2019 The Philadelphia Inquirer
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