Concord Woman Who Fought for Humanitarian Relief for Immigrants Will Attend State of the Union

A Concord woman with a life threatening condition who fought successfully to regain humanitarian protections for sick immigrants will attend President Trump’s State of the Union address next week.

Maria Isabel Bueso, 24, became a public face of the plight of hundreds of immigrants who faced deportation last year after the Trump administration abruptly stopped issuing the temporary relief waivers they had relied on to stay in the United States and continue receiving medical treatment.

Bueso, who was born in Guatemala with a rare genetic disease, testified at a congressional hearing in September, insisting she would die if she were deported. National media outlets covered her story, and public outcry intensified.

Shortly after, U.S. Citizenship and Immigration Services reversed its position and resumed considering requests for so-called medical deferred action. In December, the agency approved Bueso's request to remain in the U.S. for another two years.

At the State of the Union on Feb. 4, Bueso will be the guest of Rep. Mark DeSaulnier, D-Concord, who called for the congressional hearing she testified at and later introduced a House bill that would grant legal permanent resident status to Bueso and her immediate family.

Bueso moved to the U.S. with her family when she was 7 after doctors in the Bay Area invited her to participate in a clinical trial for a new drug to treat her condition — Mucopolysaccharidosis type VI.

The trial led to the U.S. Food and Drug Administration’s approval of the drug, which Bueso needs to survive. She receives it through intravenous infusions at UCSF Benioff Children's Hospital in Oakland.

“Isabel is one of my personal heroes and she deserves to stay in this country,” DeSaulnier said in a statement. “I am proud to help lead her fight in Congress and am so pleased she is joining me for the State of the Union.”

The medicine is not available in Guatemala, said her doctor, Paul Harmatz, a pediatrician at the hospital who led the clinical trial.

The disease has left Bueso confined to a wheelchair and dependent on a device implanted in her throat to breathe. But she still excelled in school, graduating summa cum laude from Cal State University, East Bay in 2018. Bueso also became a nationally recognized advocate for people with rare genetic conditions.

Bueso’s mom, Karla, said she was grateful her daughter would be present at the State of the Union.

“It’s such an honor for Maria Isabel,” said Karla, from the family’s home in Concord. “That girl has gone through some very difficult times, but she’s also getting to live some pretty exceptional moments.”