On Friday, Aug. 16, Isabel Bueso powered her wheelchair out of UCSF Benioff’s Children’s Hospital in Oakland after her weekly six-hour infusion—the same infusion that has kept her alive for most of her 24 years. Then her mom, Karla Bueso, got a phone call. It was their immigration lawyer, explaining a letter from U.S. Citizenship and Immigration Services (USCIS): “It means you have 33 days to leave the country or face deportation,” he said. For Isabel, it might as well have been a death sentence. “We broke down in tears,” she says. “I was crying so hard I literally thought I was going to have to go to the ER.”
Instead of a trip to the ER, Isabel— all 3'4" and 57 lbs. of her, most of it smile—would soon find herself at the center of the latest immigration debate, this one about when or if extremely sick immigrants should be able to stay in the country.
Isabel was born with mucopolysaccharidosis type VI (MPS-6), a genetic disease that causes dwarfism, enlarged organs, impaired breathing and painful bone abnormalities. At that time there was no treatment available in her home country of Guatemala—or the world— and doctors said she wouldn’t live to the age of 10. Karla was determined to prove them wrong. She explored an experimental bone marrow transplant for her daughter, to no avail. Then when Isabel was 7, UCSF invited her to participate in a trial. The