Concord Woman With Rare Disease Granted Reprieve From Deportation

1 min
Maria Isabel Bueso, 24, addressing supporters at a rally held for her on Sept. 6, 2019, at UCSF Benioff Children's Hospital Oakland. (Stephanie Lister/KQED)

A Bay Area woman receiving lifesaving treatment for a rare genetic condition, who could die if she were deported, has been approved by the federal government to remain in the U.S. for two more years.

The reprieve marks a reversal by the Trump administration, and comes months after immigration authorities told Concord resident Maria Isabel Bueso that she and her immediate family had 33 days to leave the country or face deportation.

Bueso, 24, depends on a weekly intravenous infusion of medicine at an Oakland hospital to survive. The treatment is not available in her native Guatemala.

In a letter drafted Dec. 6, U.S. Citizenship and Immigration Services' San Francisco district director, John Kramar, informed Bueso that her request for humanitarian relief, known as deferred action, had been granted and is effective until Aug. 13, 2021.

“I was so happy and relieved,” Bueso said. “I really appreciate everyone who has been so kind to my family and given us support.”

Forcing Bueso to leave the U.S. would be akin to “pulling the plug on a respirator,” said Dr. Paul Harmatz, a pediatrician at UCSF Benioff Children's Hospital, who treats her.

The genetic disease, which stunts normal skeletal development and can cause respiratory complications and organ degeneration, has left Bueso confined to a wheelchair and breathing through a device implanted in her throat.

Bueso came to the U.S. with her family when she was 7, after Harmatz and other doctors in the Bay Area invited her to participate in a clinical trial for a new drug to treat her condition — Mucopolysaccharidosis type VI. Her participation in that trial was very important in order for the U.S. Food and Drug Administration to approve the drug, called Naglazyme, said Harmatz, who led the trial.

Maria Isabel Bueso (R) and her mother, Karla Bueso, at their attorney's offices in San Francisco on Aug. 29, 2019. 'I haven't slept for days,' said Karla at the time, out of concern that her daughter could lose vital medical treatment in the U.S. (Farida Jhabvala Romero/KQED)

Bueso and her family were subsequently able to renew their deferred action status several times. Bueso has since become a nationally renowned advocate for people with rare diseases.

Last year, Bueso graduated summa cum laude from CSU East Bay, where she helped create a scholarship fund for students with disabilities.

But in early August, USCIS stopped reviewing almost all applications for deferred action, including those of immigrants in need of medical treatment in the U.S.

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About 700 people had pending applications for the humanitarian protection at the time, including 420 who were sent denial letters, according to agency officials who testified at a hearing of the House Committee on Oversight and Reform in September.

During the hearing, at which Bueso testified, USCIS officials were excoriated by several lawmakers, and public outcry grew in the following days. A week later, on Sept. 19, the agency announced it was resuming consideration of nonmilitary deferred action requests on a case-by-case basis.

The renewal for Bueso and her family — which includes work permits — means Bueso’s father, Alberto, can continue his job in sales at an import-export company. His employment supports the family and pays for Bueso’s medical care.

USCIS declined to comment on Bueso’s case.

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On Monday, Rep. Mark DeSaulnier, a Democrat representing Contra Costa County who championed Bueso’s case and called for the congressional hearing, said he tepidly applauded USCIS’ decision to allow Bueso to remain in the country.

“This is a good first step,” he said. “We're continuing to work on a permanent solution, but at least this can reasonably reduce our fears for two years.”

DeSaulnier introduced a bill in the House in late August that would grant legal permanent resident status to Bueso and her immediate family. Sens. Dianne Feinstein, D-California, and Lindsey Graham, R-South Carolina, introduced similar legislation in the Senate.

In collaboration with Democratic Rep. Ayanna Pressley of Massachusetts, who also has constituents affected by the halt to deferred action, DeSaulnier said he is also working on a broader proposal to provide more permanent relief to other immigrants in need of medical treatment in the U.S.

This fall, Bueso was recognized by both the Rare Disease Legislative Advocates and the East Bay Leadership Council for her work advocating for immigrants who depend on deferred action status to receive lifesaving medical treatment in the U.S.

Bueso said that she and her family have been living in limbo for the last six months, a period full of fear and stress. But her ordeal, she added, has also been an important learning experience.

“What I learned from this was to not be afraid — to speak up from your heart and to know that your voice matters,” she said.

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