Updated Tuesday at 10:35 a.m.

Maria Isabel Bueso has overcome many challenges as a result of the debilitating genetic disease she was born with that eventually left her confined to a wheelchair, breathing through a device and reliant upon weekly treatments to survive.

She trained to become a dance teacher and now is an instructor, and she graduated summa cum laude from California State University, East Bay — where she set up a scholarship fund for students with disabilities. She also advocates for people with her disease and other rare illnesses, traveling to Washington, D.C., to lobby for medical research.

Now, Bueso is fighting for her life once more.

Immigration authorities previously told her and her family to leave the U.S. by mid-September — or face deportation to her home country of Guatemala.

On Monday, USCIS announced the agency will reopen the pending cases of immigrants, often with severe medical conditions who were denied humanitarian relief to stay in the country.

In a statement, the Bueso family called the news of USCIS reconsidering cases, "encouraging."

"We see this as a first step in revisiting our status as U.S. residents and will be working with out local representatives to find a more permanent solution that guarantees Isabel's life is never put at risk again," according to the statement.

USCIS' announcement comes as KQED and other media outlets reported her case. Members of Congress from the Bay Area also joined roughly 100 colleagues demanding answers about the agency’s decision.

But it is still unclear what will happen to the future of the medical deferred action program, which allowed Bueso and her family to stay in the U.S.

“I feel like I'm advocating for my own life,” Bueso, 24, of Concord, said last week.

'Pulling the Plug on a Respirator'

Bueso and her family have lived in the U.S. under "deferred action," a form of temporary humanitarian relief that they renewed every few years.

[pullquote size='small' align='right' citation='Maria Isabel Bueso, 24, of Concord']'My mom and I, we started crying together. I started shaking. ... It was just a shock for me because I depend on that treatment.'[/pullquote]When she was 7, doctors in the Bay Area invited Bueso to participate in a clinical trial for a new drug to treat her condition — mucopolysaccharidosis type VI. In 2003, her family moved to California from Guatemala. The clinical trial eventually led to federal approval for the treatment.

People with Bueso’s disease lack an enzyme that allows the body to break down certain sugars. The genetic mutation leads to very short stature, because the skeletal system cannot develop normally, as well as pulmonary, heart and other problems.

Every week, Bueso receives an intravenous infusion of medicine at a hospital in Oakland. Her doctor said the treatments have extended her life many years beyond what Guatemalan physicians had predicted when Bueso was a child.

Without the weekly treatment replenishing the missing enzyme, Bueso would die in six to 12 months, said Dr. Paul Harmatz, a pediatrician at UCSF Benioff Children's Hospital and Bueso's physician.

It seemed Bueso had finally reached a sense of stability until mid-August, when she got a letter from U.S. Citizenship and Immigration Services (USCIS) informing her she was no longer authorized to stay in the country and had 33 days to leave or face deportation. The medicine she needs to survive is not available in Guatemala.

“It’s devastating,” said Harmatz, who led the clinical trial Bueso entered 16 years ago. “I would never even contemplate stopping enzyme therapy on a patient with this type of disease. It would be literally pulling the plug on a respirator.”

Bueso was getting her weekly IV infusion at UCSF when she learned of the initial news.

“My mom and I, we started crying together. I started shaking. I was pale,” said Bueso. “It was just a shock for me because I depend on that treatment.”

'A Hunt to Restrict Immigration'

In early August, USCIS stopped considering requests for medical deferred action. The only exceptions will be for military families, said an agency spokeswoman who declined to be identified.

[pullquote size='small' align='right' citation='Dr. Paul Harmatz, a UCSF pediatrician who led the trial in which Maria Isabel Bueso participated']'I would never even contemplate stopping enzyme therapy on a patient with this type of disease. It would be literally pulling the plug on a respirator.'[/pullquote]

The spokeswoman previously disputed that the program was ending altogether, saying that U.S. Immigration and Customs Enforcement (ICE) — the agency in charge of deportations — would now be handling medical deferred action requests instead.

Bueso’s attorney, Martin Lawler, said ICE had not yet provided a way to apply for protection from deportation, and USCIS had not provided the family any more information as of last week.

“There's no reason not to extend the status of people who are here who will basically die without the medicines that we provide them," Lawler said about the initial notice Bueso and her family received from immigration. "They have private medical insurance, they are no burden to the taxpayer. Isabel's father works and supports the family.”

The policy changes come as part of a series of new rules and interpretations of regulations by the Trump administration that are aimed at restricting new immigration and denying protections to immigrants already in the country, advocates say.

Such recent policies include penalizing green card applicants who use certain public benefits, and making it much harder for thousands of migrants at the U.S.-Mexico border to gain asylum protections. Many of these executive actions are being challenged in the courts.

[aside tag='migrants' label='Related Coverage']“This latest decision is yet another indication that the Trump administration is seeking to close off all avenues of relief for people here in the United States,” said Aaron Reichlin-Melnick, a policy analyst with the American Immigration Council. “There seems to be no guiding principle behind all of this except for a hunt to restrict immigration in as many ways as possible.”

Rep. Judy Chu (D-Monterey Park) denounced the Trump administration’s policy change.

“It's clear that this administration will not stop looking for any opportunity to wage war on immigrants,” said Chu. “These families deserve the certainty of knowing that they can stay together and in one place while seeking treatment for diseases like cancer, HIV and cerebral palsy.”

ICE did not return requests for comment on how people can apply for medical deferred action, or why Bueso’s denial letter failed to mention she could seek a review of her case with the agency.

“ICE reviews each case on its own merits and exercises appropriate discretion after reviewing all the facts involved,” said Paul Prince, an agency spokesman.

Officials with USCIS say they receive about 1,000 non-military requests a year for deferred action on humanitarian grounds. Many are related to family support or medical issues, and most are denied, according to USCIS.

It is unclear how many immigrants have received denial notices like Bueso’s. But attorneys in multiple states reported getting similar rejection letters from USCIS for pending applications, some of which were submitted months before the initial policy change, according to the American Immigration Lawyers Association.

Sen. Kamala Harris and Rep. Mark DeSaulnier, whose district includes Concord, where the Bueso family has lived for six years, urged the Department of Homeland Security to grant an extension of the medical deferred action protections (Homeland Security is the parent agency that includes USCIS and ICE).

Karla Barrera and her daughter, Maria Isabel Bueso, at their attorney's offices in San Francisco on Aug. 29, 2019. "I haven't slept for days," said Barrera, 50, who fears her daughter could lose vital medical treatment in the U.S.

'We Made a Life Here'

[aside tag='immigration' label='More Coverage']USCIS also told Bueso’s mother, father and older sister to leave the U.S. Bueso’s father, Alberto, works in sales at an import-export company, while her sister, Ana Lucia, is a preschool teacher.

“We made a life here. We left family, careers, friends behind in Guatemala for Maria Isabel,” said Bueso’s mother Karla Barrera, 50. “Getting a letter telling us that we have to leave the country in 33 days from the date of the letter is shocking. I’m still processing it.”

Bueso’s participation in the years-long clinical trial was important in getting the drug, called Naglazyme, approved by the U.S. Food and Drug Administration, said Harmatz, who led the trial.

“There will be a devastating loss to our community,” said Harmatz. “It will be a tragic outcome for Isabel, after all she's gone through, taking care of her disease.”

Bueso remembers watching as babies with her condition, also known as MPS VI, were given Naglazyme to help stop the disease’s progression early on and avoid some of the health issues she struggles with daily.

“I felt really proud that I could help other people,” said Bueso.

Bueso and her family say if they are placed in deportation proceedings, they will fight their case as best they can. But they have not given up hope that the government will reconsider.

“I have just been praying a lot and telling people to pray for me,” she said.

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