The Senate today passed legislation introduced by California Senators Dianne Feinstein and Alex Padilla and Congressman Mark DeSaulnier (all D-Calif.) that would allow California resident Isabel Bueso and her family to remain in the United States so she may continue to receive treatment for her rare, life-threatening disease.

 
The House passed the bill in June and it now heads to the president’s desk for his expected signature.

 

Bueso is a Guatemalan national who suffers from a life-threatening disorder called Mucopolysaccharidosis Type VI (MPS-VI). In 2003, she and her family came to the United States at the invitation of doctors who were conducting a clinical trial to treat her condition. The trial, with her participation, led to Food and Drug Administration approval of medication to treat MPS-VI.  Bueso and her family have since received deferred action so that she could continue receiving life-saving treatment, which is not available in Guatemala.

 
In 2019, the Trump administration notified Isabel and her family that they would no longer receive deferred action and would be deported. This decision was effectively a death sentence for Bueso, who continues to receive weekly infusions to replace an enzyme that keeps her alive.

 

U.S. Citizenship and Immigration Services ultimately reconsidered that decision and granted the Bueso family an extension to their deferred action after Senate intervention. However, without the senator’s legislation, USCIS could reject any future requests for deferred action.

 

“She has beaten the odds due to her spirit and because of the life-saving treatment that she’s receiving in the United States,” said Senator Feinstein. “The Bueso family will now be allowed to remain in California, where they will continue to enrich their community, and where Ms. Bueso will be able to receive the care that allows her to live a life and to thrive.”

 

“Forcing Isabel to leave the United States, the only place she can receive life-saving treatment, would have been a death sentence. So today, I am thrilled to say that Isabel will be remaining at home with her family,” said Senator Padilla. “The fact that Isabel had to fight for her life to begin with is further proof that our immigration system is in dire need of reform. But today, the Senate did the right thing for Isabel and the Bueso family, and all of California is grateful to have such an inspiring, welcoming neighbor at home for years to come.”

            Video of Senator Padilla’s floor remarks is available here.

 

“For the past three and a half years, since being threatened by the Trump Administration with deportation despite being a legal U.S. resident, Isabel Bueso and her family have lived in fear. All along the way, we have been leading her fight in Congress to ensure she can remain in the U.S. so that she can continue receiving lifesaving treatment for her rare disease,” said Congressman DeSaulnier. “I am so relieved for the Buesos that they will finally get long overdue peace of mind and look forward to the President signing this legislation into law. As always, I am honored to have worked alongside Isabel and her family in the pursuit of justice and I remain in awe of her strength and poise. I am also grateful to Senators Feinstein and Padilla for their partnership and persistence.”

 

            Video of Congressman DeSaulnier’s floor remarks is available here.

What the bill does:

 

Martin Lawler has helped Isabel and her family for many years, and is thrilled to see this bill pass. 

The US Congress passed a very unusual, private bill granting Isabel and her parents' permanent resident status. Many thanks to former speaker Nancy Pelosi, Senator Dianne Feinstein and Congressman Mark DeSaulnier who, without their dedicated help, this would not have been possible.