A Concord woman with a rare genetic disorder who faced deportation following a Trump edict in August has been granted "deferred action" by U.S. Citizenship and Immigration Services (USCIS) and can remain in the Bay Area to receive medical treatment for another two years.
24-year-old Isabel Bueso was born in Guatemala with the very rare genetic condition called Maroteaux-Lamy syndrome. She and her family immigrated to the U.S. at the invitation of doctors in 2003 when she was just 8 years old, so that she could participate in clinical drug trials. Those drugs have saved her life — she originally was not expected to live past the age of 7 — and she successfully lobbied Congress in September to allow her and her family to remain in the country.
President Trump quietly tried to do away with all deferred-action status individuals over the summer, ending the program under which Bueso and her family remained in the U.S. under medical auspices without fearing deportation. As Bueso told the Chronicle at the time, "My mom cried. I cried. I was shaking, pale to the point that my mom thought I was going to go to the ER."
Bueso appealed to Congressman Mark DeSaulnier (D-Concord), who helped bring attention to hers and other urgent cases, and led the Trump administration to partially reverse itself a month after denying deportation protection to about 400 individuals and their families seeking medical exemptions. USCIS reopened those 400 cases, and it is issuing case-by-case determinations.
Maria Isabel Bueso’s story inspired countless Americans to speak out for immigrants like herself who benefit from medically deferred action, a humanitarian initiative that is literally life-saving. It was my pleasure to welcome her to the U.S. Capitol today. pic.twitter.com/gPdNe0Pjgw— Nancy Pelosi (@SpeakerPelosi) September 10, 2019
As the Chronicle now reports via a family spokesperson, Bueso was officially granted deferred action again for two years as of Monday. This means she can continue receiving her weekly, life-saving, six-hour infusions at UCSF Benioff Children’s Hospital in Oakland.
DeSaulnier issued a statement saying, "While we celebrate today, we remain committed to finding a long-term solution for Isabel and the hundreds of others whose lives were upended."
Bueso's enzyme disorder means that her cells can not break down and process sugars, which leads to skeletal and organ abnormalities. Experimental treatments have kept her alive, and helped her to graduate from Cal State East Bay with honors in 2018.
Paul Harmatz, Bueso's pediatric gastroenterologist at UCSF, penned an op-ed in the Washington Post in September after Bueso testified before Congress, writing that Trump's "irrational changes" to immigration policy were threatening her life. Further, he noted that since coming to the U.S. at his invitation, Bueso herself has been a help to researchers and to the global understanding of her condition. "Her participation [in our study] helped win [her drug] treatment Food and Drug Administration approval, and she continues to be a part of follow-up studies that help doctors and scientists better treat people with her condition, also known as MPS-6," Harmatz wrote. "You would think a grateful country might reward Bueso for the role she has played in advancing this medical treatment by allowing her to stay in the United States and continuing to receive the treatment she helped prove effective."
The USCIS says it receives around 1,000 non-military requests for deferred action per year, the majority of which are denied.