Wednesday, May 16, 2007

I cannot believe how hard this must be for a family to have a kid or kids with FA and have something else major to deal with. This family in Chicago could be sent away from here, but hopefully the government will be nice to them. There are families with FA kids with a parent fighting in the war in Iraq. It is doubly unfair.

Family taking a risk to save infant

Undocumented residents are making a public appeal to other area Latinos to submit to bone-marrow screenings in hopes of finding a possible donor for their 16-month-old child, who is in desperate need

By Mary Owen
Tribune staff reporter

May 11, 2007

Felipe Aguilera needs a bone marrow transplant, and doctors say his chances of finding a match are greatest among other Latinos.

On Thursday, his family and local activists said they worry that undocumented Latinos may be afraid to be screened because it could tip the government to their illegal status. That would limit the pool of potential donors, they said.

The bouncy, wide-eyed 16-month-old cannot find a match in his family or in the National Marrow Donor Program registry.

As illegal residents, Aguilera's parents said they risked speaking with the media to save their son, who was born in the U.S.

"If he's trying and wanting to live, why would I not ask for help?" said his mother, Nancy Aguilera, of Aurora, whose three children are U.S. citizens. "I'm here to ask all people in our community to help save my son's life."

The family has planned free bone marrow screening drives this summer in the Chicago area to boost the chances of finding a match for Felipe. One is planned for 7 p.m. Friday at Alamo De Aurora, 2445 Church Rd., Aurora.

Drive organizers urge the estimated 12 million undocumented immigrants from all countries to be screened and placed on the bone marrow donor registry, a nonprofit organization that compiles potential donors. Information is private and not shared with government agencies, according to registry officials.

"There is a fear in our community, but there should be no fear," said Julie Santos of LifeSource, a local nonprofit that collects blood and blood products. Santos also is co-chairwoman of the United Voices for United Families campaign, which supports mixed-status immigrant families.

Felipe is battling a rare bone marrow disease called Fanconi anemia, which weakens the immune system and can lead to leukemia and cancer even after a transplant. He was diagnosed at birth and has undergone two transfusions and seven surgeries.About 35,000 people seek matches each year, according to the registry, and about 3,100 have transplants. There are 580,000 Latinos listed in the donor registry and lower numbers for other minority groups. Bone marrow screening is noninvasive, requiring only swab samples from the four corners of an individual's mouth.

"We put a lot of effort into all of our minority groups, and there are several barriers in all categories," said Steve Lovelace, a registry spokesman. "There's fear of the system, the concerns of undocumented individuals and just lack of normal medical access across the board."

The search for a donor will take the family back to Mexico this summer. Bone marrow screenings are scheduled in Durango, Mexico, where Nancy Aguilera was born.

Stone Park Mayor Beniamino Mazzulla contacted government officials in Durango, which is the west suburb's sister city. Stone Park will host a rodeo May 27 to help pay for the family's trip.

"He's a happy little kid for someone who is going through such medical trouble," Mazzulla said. "He's a fighter and we want to help that fight."

For more information about free local bone marrow screenings, call 847-736-5160 or 630-701-5122.

Copyright © 2007, Chicago Tribune

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