Maria Isabel Bueso, 24, of Concord, Calif., reacts to the testimony of Jonathan Sanchez, 16, of Boston, who has cystic fibrosis, during a House Oversight subcommittee hearing into the Trump administration’s decision to stop considering requests from immigrants seeking to remain in the country for medical treatment and other hardships, Wednesday, Sept. 11, 2019, in Washington. (AP Photo/Jacquelyn Martin)
A Concord woman battling a rare and deadly disease will be permanently allowed to reside in the United States thanks to a bill signed into law Wednesday.
In 2003, Isabel Bueso came to the U.S. from Guatemala at the age of 8 to receive life-saving treatment as part of a medical trial for Maroteaux-Lamy Syndrome, also known as Mucopolysaccharidosis Type VI, a genetic disorder that ravages many of the body’s tissues and organs.
Bueso and her family had been residing lawfully in the East Bay under a program that allows immigrants to avoid deportation while receiving medical treatment not offered in their home country. But in 2019, the Trump Administration, without public notice, canceled the “deferred action” program. A U.S. Citizenship and Immigration Services letter sent to the Bueso family said they had 33 days to return to Guatemala or face deportation proceedings.
Maria Isabel Bueso, 24, of Concord, Calif., reacts to the testimony of Jonathan Sanchez, 16, of Boston, who has cystic fibrosis, during a House Oversight subcommittee hearing into the Trump administration’s decision to stop considering requests from immigrants seeking to remain in the country for medical treatment and other hardships, Wednesday, Sept. 11, 2019, in Washington. (AP Photo/Jacquelyn Martin)
Maria Isabel Bueso, 24, of Guatemala, who came to the United States when she was 7 to participate in a clinical trial for a drug to treat an enzyme disease, speaks at a press conference before a congressional hearing in Washington, Sept. 11, 2019. On Wednesday, immigrants told a House Oversight subcommittee why it was imperative that they remain in the country, despite the Trump administrations abrupt elimination of a program that had enabled them to receive lifesaving medical care without the fear of deportation. (Anna Moneymaker/The New York Times)
Witnesses including from left, Maria Isabel Bueso of Concord, Calif., Jonathan Sanchez, 16, of Boston, Penn State Law School Center for Immigrants’ Rights Clinic Director Shoba Sivaprasad Wadhia, Fiona Danaher, a Harvard Medical School Instructor in Pediatrics, Anthony Marino, Irish International Immigrant Center Director of Immigration Legal Services, and Thomas Homan, former Acting Director of the U.S. Immigration and Customs Enforcement, are sworn in at a House Oversight subcommittee hearing into the Trump administration’s decision to stop considering requests from immigrants seeking to remain in the country for medical treatment and other hardships, Wednesday, Sept. 11, 2019, in Washington. (AP Photo/Jacquelyn Martin)
Maria Isabel Bueso, 24, of Concord, Calif., left, is kissed on the forehead for luck by her friend Carly Marcus, next to Jonathan Sanchez, 16, of Boston, before Bueso and Sanchez, testify at a House Oversight subcommittee hearing into the Trump administration’s decision to stop considering requests from immigrants seeking to remain in the country for medical treatment and other hardships, Wednesday, Sept. 11, 2019, on Capitol Hill in Washington. (AP Photo/Jacquelyn Martin)
Maria Isabel Bueso, 24, of Concord, Calif., left, and Jonathan Sanchez, 16, of Boston, who both have medical deferred action, take their places at the start of a House Oversight subcommittee hearing into the Trump administration’s decision to stop considering requests from immigrants seeking to remain in the country for medical treatment and other hardships, Wednesday, Sept. 11, 2019, on Capitol Hill in Washington. (AP Photo/Jacquelyn Martin)
Maria Isabel Bueso, 24, of Concord, Calif., left, who has a rare disease and needs life saving treatments that are unavailable in her home country of Guatemala, leaves a House Oversight subcommittee hearing into the Trump administration’s decision to stop considering requests from immigrants seeking to remain in the country for medical treatment and other hardships, Wednesday, Sept. 11, 2019, in Washington. (AP Photo/Jacquelyn Martin)
Maria Isabel Bueso, 24, of Concord, Calif., left, shakes hands with Rep. Alexandria Ocasio-Cortez, D-N.Y., after Bueso, who has a rare disease and needs life saving treatments that are unavailable in her home country of Guatemala, testified at a House Oversight subcommittee hearing into the Trump administration’s decision to stop considering requests from immigrants seeking to remain in the country for medical treatment and other hardships, Wednesday, Sept. 11, 2019, in Washington. Behind Bueso is Jonathan Sanchez, 16, of Boston, who has cystic fibrosis and was also on the panel. (AP Photo/Jacquelyn Martin)
Karla Bueso lifts her daughter, Maria Isabel Bueso, 24, back into her wheelchair at home in Concord, Calif., Aug. 28, 2019. Bueso came to the United States as a child for treatment of her rare genetic disease. She now must leave the country in about a month or face deportation. (Jim Wilson/The New York Times)
Maria Isabel Bueso, 24, at home in Concord, Calif., Aug. 28, 2019. Bueso came to the United States as a child for treatment of her rare genetic disease. She now must leave the country in about a month or face deportation. (Jim Wilson/The New York Times)
As part of a study by BioMarin Pharmaceutical, Concord resident Maria
Isabel Bueso has endured weekly, day-long infusions, multiple surgeries and
paralysis in a courageous fight to survive Maroteaux-Lamy Syndrome, an
enzymatic disorder that ravages many of the body’s systems. Now, she’s
facing deportation to her home country Guatemala, where the life-saving
treatment is not available.
Her doctor, in a letter to the federal agency, described the order as the equivalent of a death sentence. Following public outcry, the Trump Administration reconsidered deferred action requests and ultimately extended the Bueso family’s stay for two years.
A bill authored by U.S. Rep. Mark DeSaulnier signed in as law this week ensures the family can remain in the U.S. so she can continue receiving care. The bill allows them to apply for green cards at any point in the next two years, and conveys legal status for them to remain in the country.
“There are no words to express our feelings and gratitude for giving us the opportunity to create a solid future in this country,” Bueso said Wednesday. “Congressman DeSaulnier’s support and dedication to our struggle, finding a way forward and making it happen in spite of obstacles, is a testament to his commitment to making life better for his constituents and others. I hope that more people can get the relief like I did and that this will inspire others to know that their members of Congress can help.”
H.R. 758 was passed by the House of Representatives in June and received support from California’s two U.S. senators, Dianne Feinstein and Alex Padilla. President Biden signed it into law Wednesday.
Maria Isabel Bueso, 24, of Concord, Calif., left, who has a rare disease and needs life saving treatments that are unavailable in her home country of Guatemala, leaves a House Oversight subcommittee hearing into the Trump administration’s decision to stop considering requests from immigrants seeking to remain in the country for medical treatment and other hardships, Wednesday, Sept. 11, 2019, in Washington. (AP Photo/Jacquelyn Martin)
In a statement, DeSaulnier, whose congressional district consists of most of Contra Costa County, said he was “honored to work alongside (the Bueso family) in the pursuit of justice by leading the effort in Congress to allow them to stay here permanently.”
“Isabel’s medical condition is permanent and her status in the U.S. to get treatment should be too,” DeSaulnier said. “I am so relieved for the Buesos that they will finally get long overdue peace of mind now that President Biden has signed this bill into law so they can spend their time focusing on Isabel’s care instead of unnecessary paperwork and worry.”
Bueso is a summa cum laude graduate from Cal State East Bay and an advocate for patients with rare diseases. Before receiving treatment in the U.S., she was expected to live to be 7 years old. She is now 27.
Rachel Heimann Mercader covers local news in Contra Costa County. She is an East Bay native with a passion for accountability journalism and government transparency. She joined the Bay Area News Group in 2022.
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