Bill would allow Concord immigrant stay in U.S. to continue treatment for life-threatening disease

WASHINGTON - Lawmakers on Capitol Hill have taken new steps in the efforts to help a disabled Concord woman, facing deportation, remain in the U.S. to continue treatment for a life-threatening condition.  

Isabel Bueso, 24, is battling a genetic disorder known as Maroteaux-Lamy Syndrome or Mucopolysaccharidosis Type VI. 

In 2003, she and her family left Guatemala and came to the U.S. legally, so she could receive treatment for the rare disease.

But the Trump Administration ended medical deferred action, leaving immigrants like Bueso facing deportation. 

On Thursday, U.S. Rep. Mark DeSaulnier, D-Concord, announced that the House Judiciary Committee's Subcommittee on Immigration and Citizenship voted to request a report from the Department of Homeland Security (DHS), as part of the first step toward efforts to pass H.R. 4225. The bill would allow Bueso and her family to remain in the U.S. so she could continue to receive treatment. 

“Isabel and her family have been living in limbo for over a decade," DeSaulnier said in a press release. "When the Trump Administration ended medical deferred action, their worst nightmare became a reality. They deserve this private bill so they can have peace of mind and put their focus on maintaining Isabel’s health — not on whether they will be targeted again."

Bueso has said that her life is here. She graduated with honors from Cal State East Bay and has been an advocate for others with rare illneses.

She immigrated to the U.S. with her family when she was 7 years old. She came at the invitation of doctors who wanted her to participate in clinical drug trials, which a drug manufacturer said has helped identify an effective, life-saving treatment for Maroteaux-Lamy Syndrome. 

This story was reported from Oakland, Calif.