LOS ANGELES — Maria Isabel Bueso was 7 years old when she came to the United States from Guatemala at the invitation of doctors who were conducting a clinical trial for the treatment of her rare, disfiguring genetic disease. The trial was short on participants, and thanks to her enrollment, it eventually led the Food and Drug Administration to approve a medication for the condition that has increased survival by more than a decade.
Now 24, Ms. Bueso, who had been told she likely would not live past adolescence, has participated in several medical studies. She has won awards for her advocacy on behalf of people with rare diseases, appearing before lawmakers in Washington and in Sacramento. Over the years, her parents have paid for the treatment that keeps her alive with private medical insurance.
But last week, Ms. Bueso received a letter from the United States government that told her she would face deportation if she did not leave the country within 33 days, an order described by her doctor, lawyer and mother as tantamount to a “death sentence.”
Without any public announcement, the United States Citizenship and Immigration Services eliminated a “deferred action” program this month that had allowed immigrants like Ms. Bueso to avoid deportation while they or their relatives were undergoing lifesaving medical treatment. The agency said that it received 1,000 deferred-action applications related to medical issues each year.
The policy change is the latest in a series of moves by the Trump administration to revoke or modify procedures that have allowed certain immigrants to remain in the United States on humanitarian grounds. In addition to those with serious medical conditions, they included crime victims who have helped law enforcement with investigations and caretakers of sick children or relatives.
“I have been feeling super scared and overwhelmed,” said Ms. Bueso, whose lower body is paralyzed from the disease, an enzyme disorder that inhibits cells from processing sugars. “The treatment that I receive keeps me alive.”
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In letters reviewed by The New York Times, Ms. Bueso, her family and other deferred action applicants were told that requests would be considered only from people who are in the military, and that the authorities would “commence removal proceedings” against those who did not leave the country.
Martin Lawler, Ms. Bueso’s lawyer in San Francisco, said he had been told “there is no appeal, and nobody has told us how to proceed.”
Among others who could be forced to leave the country are children being treated for sickle-cell anemia, cancer and other illnesses.
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Every week for several years, Ms. Bueso has received intravenous infusions of the replacement enzyme that treats her disease, Mucopolysaccharidosis VI, or MPS-6, which causes dwarfism, clouded vision and spinal cord compression, among other abnormalities.
“Stopping this therapy will dramatically shorten her life span,” said Paul Harmatz, the pediatric gastroenterologist who was involved in the original trial and has been treating Ms. Bueso since 2003 at the U.C.S.F. Benioff Children’s Hospital in Oakland, Calif.
The clinical trial had struggled to find patients, and without Ms. Bueso’s participation, Dr. Harmatz said, it would not have taken place. The breakthrough that came from the trial has helped people with the disease live longer than 30 years, he said. Before the drug, they rarely survived past 20.
Across the country, doctors and immigration lawyers scrambled to understand the new policy and its consequences. In Miami, it meant possibly keeping an 8-year-old girl with nerve cancer from participating in an experimental treatment at Memorial Sloan Kettering Cancer Center in New York. Her father, who is in the country illegally, is the only parent available who can travel with her, said Tammy Fox-Isicoff, a Miami immigration lawyer who is representing the family.
Without deferred action, the man cannot legally drive or board an airplane from Miami to New York, where the girl must go each month for the treatment.
In a statement, Boston Medical Center, a research hospital in a city that is a hub for clinical trials and innovative treatments, said it was “deeply concerned” about the new policy and how it would affect its patients who are receiving treatment for “extremely serious medical conditions.”
“We oppose any actions that could prevent people from accessing the health care they need,” the hospital said.
Brent Renison, a lawyer who is representing an Indian woman who could be affected, said deferred action was “meant to allow for some discretion, to recognize cracks in the law that people fall into, and alleviate humanitarian situations and needless suffering.”
It has been 16 years since Ms. Bueso began receiving weekly infusions of the approved drug, Naglazyme. She has built a productive life despite the crippling disease. Last year, she graduated summa cum laude from California State University, East Bay, where she worked with the school to start a scholarship for students with rare diseases.
Her family lives in a middle-class neighborhood in Concord, Calif., in a house her parents bought and renovated to accommodate their daughter’s wheelchair. They did not expect to leave the country, having won permission to stay every time they applied for an extension.
When Mr. Lawler, the family’s lawyer, told them about the government’s decision last week, Ms. Bueso began to shake uncontrollably.
“We were crying with the nurses, doctors, everyone,” her mother, Karla Bueso, said. “Without her treatment, it’s like a death sentence. It has been hard to process.”
Neither the drug nor the medical care that she requires is available in Guatemala. Without the drug, her health is expected to quickly deteriorate. Her breathing could become belabored; she could suffer cardiac arrest and become susceptible to infections.
“We have watched her grow up and mature, and become a responsible young adult, a leader advocating nationally,” Dr. Harmatz said. “If you take it away, it will be a rapid return to her previous state. Death would be the outcome.”
