Isabel Bueso

Isabel Bueso (born Maria Isabel Bueso Barrera) is a Guatemalan activist with Maroteaux-Lamy syndrome living in the United States under deferred action.

Isabel Bueso in 2020

Background

Bueso was born in Guatemala. She was diagnosed with Maroteaux-Lamy syndrome, or MPS VI, when she was one and a half.[1] In 2003, when she was seven years old, she and her family moved to the Bay Area so that Bueso could participate in a clinical research trial for a treatment for Morquio A syndrome at UCSF Benioff Children's Hospital.[2] That treatment successfully obtained FDA approval, and Bueso continued to participate in follow-up studies.[3]

In 2018, she graduated from California State University East Bay, where she had majored in sociology and had been involved in disability advocacy.[2]

Threat to deferred action status

Because of deferred action, Bueso and her family were allowed to stay in the United States so that she could continue getting lifesaving treatment at UCSF Benioff Children's Hospital. When the Trump administration rescinded that program in August 2019, Bueso and her family were told they had 33 days to leave the country and return to Guatemala, even though the treatment Bueso requires is not available there.[4] UCSF Benioff staff held a rally in support of Bueso, and Congressman Mark DeSaulnier introduced a private bill that would give Bueso and her family immigrant visas.[5][4] Bueso testified about her situation at a House Committee on Oversight and Reform hearing.[6][7] After public outcry, U.S. Citizenship and Immigration Services reversed the decision and said they would continue to review deferred action requests on a case-by-case basis.[8]

In December 2019, immigration officials granted Bueso deferred action for two more years.[9]

References
  1. Minutaglio, As told to Rose (2019-09-19). "My Lifesaving Medical Treatment Is Only Available In America. Now I Could Be Deported". ELLE. Retrieved 2019-12-10.
  2. "She wasn't expected to live past 7. Saturday she graduates from college with honors". SFChronicle.com. 2018-06-09. Retrieved 2019-12-10.
  3. Harmatz, Paul (13 September 2019). "Immigrants help us find treatments for rare diseases. We owe them for that". Washington Post. Retrieved 9 December 2019.
  4. "Disabled Concord woman from Guatemala fights to stay in the US". SFChronicle.com. 2019-09-07. Retrieved 2019-12-10.
  5. DeSaulnier, Mark (2019-09-25). "Text - H.R.4225 - 116th Congress (2019-2020): For the relief of Maria Isabel Bueso Barrera, Alberto Bueso Mendoza, Karla Maria Barrera De Bueso, and Ana Lucia Bueso Barrera". www.congress.gov. Retrieved 2019-12-10.
  6. "Congressional Hearing to Review Agency's End of Humanitarian Protections for Sick Immigrants". KQED. 2019-09-04. Retrieved 2019-12-10.
  7. Jordan, Miriam (2019-09-11). "'If I'm Sent Back, I Will Die': Sick Immigrants Tell Their Stories to Congress". The New York Times. ISSN 0362-4331. Retrieved 2019-12-10.
  8. "Isabel Bueso Hopeful After Feds Reverse Decision Ending Immigrant Medical Relief". 2019-09-19. Retrieved 2019-12-10.
  9. "Critically ill Concord woman slated for deportation will remain in the U.S." SFChronicle.com. 2019-12-10. Retrieved 2019-12-10.
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