in the middle
Teen's future hangs on two hot-button issues

December 26, 2006
BY JUSTINA WANG Staff Writer
In the political world outside the Alvarez family apartment, 2006 was a year of immigration protests and health-care debates, when thousands of local residents marched for reform and Gov. Rod Blagojevich launched a program to cover all of Illinois' uninsured children.

In a sense, they were the faces behind the issues: The Alvarezes officially joined the ranks of undocumented immigrants this May when they remained in Aurora after their tourist visa expired.

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Diego Alvarez, 14, came to Aurora from Mexico City with his family in hope of receiving better treatment for his worsening cystic fibrosis, a genetic disease that causes the body to produce abnormally thick mucus that clogs the lungs and leads to life-threatening lung infections.
(Marianne Mather / Staff Photographer)

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Diego Alvarez laughs with his sister Brenda, 18, at their Aurora home. Diego is homebound due to the risk of infection. He needs a double-lung transplant but can't get a hospital to take his case because he's not a legal immigrant.
(Marianne Mather / Staff Photographer)
Sylvia Alvarez has since signed her 14-year-old son up for Blagojevich's All Kids health insurance -- a sweeping state program that, for the first time, covers immigrants of any legal status, but does not pay for the $1,766 bottle of prescription medication Diego needs each month.

Inside their Aurora home, however, there is no buzz of politics.

There are only the sounds of telenovelas on the TV set, the hum of Diego's oxygen machine, and the constant coughing and hacking as his body tries to expel the mucus that clogs and infects his lungs.

To Sylvia, securing legal residency status is not a topic on domestic affairs. It's the quickest route she sees to getting Diego the double-lung transplant that may keep him alive.

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As Congress toyed with border security and workers' permits this year, the immigration debate spurred impassioned grass-roots demonstrations on both sides and mobilized unprecedented numbers of Aurorans to join nationwide rallies.

In April, 1,000 East and West Aurora high school students skipped school and marched for reform, and local priests staged a hunger strike in front of former House Speaker Dennis Hastert's Batavia office to support a controversial immigration bill.

In May, during the largest march in recent Aurora history, more than 11,000 local residents took to the streets as part of the nationwide "A Day Without Immigrants" demonstrations.

In summer, hundreds protested in dueling immigration rallies in front of Hastert's office, and thousands participated in a four-day trek from Chicago to Batavia in the Immigrant Workers Justice Walk.

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To the Alvarez family, America represents a wealth of knowledge on cystic fibrosis, the incurable and progressive genetic disease Diego was diagnosed with when he was 4 months old.

Speaking through a translator, Sylvia said the differences in health care are tremendous. In Mexico, doctors knew little about the disease and told her family that the boy would likely die before he was 5. At Stroger Hospital of Cook County last year, he gained nearly 9 pounds -- an unheard of amount that put him, for the first time, at an almost healthy weight.

Diego and his family came from Mexico City last fall to visit relatives and research better treatment. Weeks after he arrived in Aurora, he caught a virus that infected his lungs and left him too sick to travel.

A Rush University Medical Center specialist, Dr. Girish Sharma, took on his case under the hospital's Charity Care Program and told the family that the best chance to add years to Diego's life was a double-lung transplant.

So while the country debated immigration policies, Sylvia sought out local advocates from Aurora's League of United Latin American Citizens council and Centro Cristo Rey, organizations known for their involvement with Hispanic and immigration issues.

With their help, she raised $73,000 -- enough money to get University Medical Center in Tucson, Ariz., to take Diego on as a patient. They had wanted to send him to St. Louis Children's Hospital, a center that could perform the transplant and also provide five years of follow-up care. But with no health insurance, that option comes with a practically unattainable $2 million price tag.

So they turned to University Medical Center, which agreed to accept the $73,000 and waive the rest of their fees.

But there's still another catch. That hospital requires documented proof of the Alvarez family's legal resident status before operating.

The Alvarez family has already received one six-month extension on their visa for medical treatment but haven't received a response since they filed for a second extension.

"I think everybody is worried about the perception this is going to make, like here is another guy coming in and getting free services from us," said Art Velasquez, president of Aurora's LULAC branch. "It seems like the public is all up in arms about illegal aliens, so we really don't know how (the Alvarez family's) application will be processed."

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When state officials launched All Kids this year, they promoted it as the plan to bring affordable and accessible health insurance to Illinois' middle class.

Five months after its start, the program's popularity has exceeded expectations -- but the ones to really jump at the opportunity have been lower-income immigrants, here both legally and illegally.

All Kids replaced the state's Kid Care program and removed the restrictions that kept undocumented immigrants from joining many other state programs.

Nearly 60 percent of the new All Kids enrollees are immigrants who could not receive Medicaid because of their citizenship status.

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Doctors told the Alvarez family the transplant would be a difficult and expensive procedure with a high risk of complications and no guarantees. And even if Diego undergoes the procedure, it will be a struggle to come up with the estimated $1,974 each month to pay for the drug cocktail he'll need as part of his aftercare.

But like any mother, Sylvia declares that she's willing to sacrifice everything, even if she's only gambling for a chance at adding a few more years to her son's life.

She knows she has little control over her immigration paperwork and the insurance policies. So she does what she can.

She appeals to the advocates from LULAC and any other organization she can find. She talks to anyone who may know about transplant centers and treatment options. She took notes on a TV program she saw about a young man who got his immigration application rushed through the system because he needed a kidney transplant.

And in between playing politics, Sylvia plays nurse. Every morning, Diego has four inhalation treatments that last 15 to 20 minutes each. Then he puts on a vibrating vest for 20 minutes every four hours that massages his chest and helps clear up any phlegm. They rotate through the treatments during the day, and at night hook him up to a feeding tube until the routine starts again at 6 a.m.

Every six weeks, they pay a visit to Rush Medical Center for a check-up.

Diego misses his friends and wants to go home to Mexico. He feels desperate in the hospital sometimes, and has stopped drawing so much now that he's run out of ideas for the cartoons he once loved.

But he wants to stay in Aurora, he said, because he knows that this is his chance to get well.


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