East Bay woman battling rare illness facing deportation may get reprieve from Trump Administration

Less than a week after a story came out about a 24-year-old East Bay woman battling a rare disease who received a sudden deportation notice, the Trump Administration announced that it would reconsider its decision to force immigrants facing life-threatening health crises to return to their home countries.

"While I am thrilled that my deferred action status is being reconsidered, we need to work together to find a more permanent solution that gives families like mine the guarantee that our lives won't continue to be threatened," Isabel Bueso said in a statement. 

The New York Times first reported this change of heart on Monday, following stories about the Concord, Calif.,  woman who suffers from a rare disorder, called MPS6, which generated public outrage and was roundly condemned by the medical establishment because of her pending deportation order with no prior warning.

"Yes, it appears that the administration is revising its new policy, and we are hopeful that it will grant an extension of Isabel and her family's medical deferred action status," Bueso's attorney, Martin Lawler, told KTVU on Tuesday via email. "We're waiting for details." 

On Aug. 7, the United States Citizenship and Immigration Services, without public notice, got rid of a "deferred action" program that had allowed immigrants to avoid deportation while they or their relatives were undergoing lifesaving medical treatment.

The agency, part of the Department of Homeland Security, had sent letters informing those who had asked for a renewal, which the immigrants must make every two years, that it was no longer entertaining such requests. The letters said that the immigrants must leave the country within 33 days, or face deportation.

Bueso had received one of those letters. And it's unclear how many others received them, too. 

"I cried a lot," she told KTVU last week. "I was shaking. I was pale from the shock." 

Bueso is a native of Guatemala who has an extremely rare and potentially fatal genetic disease that affects her growth, breathing, heart and spinal cord.

Doctors in Guatemala had no answer. But because of a medical exemption that allowed immigrant patients with life-threatening illnesses to live in the U.S. legally while getting treatment, Bueso and her family moved to Concord when she was 7. Every Friday, she goes to UCSF Benioff Children's Hospital in Oakland where she spends all day getting treatment. 

Her family had been given to Sept. 14 to leave. Her doctor, Paul Harmatz, said without the treatment she won't survive.

It's still not exactly clear what will happen next.

"Our work is not finished," Lawler said. "We must ensure that the administration grants the extension, but furthermore we need to find a permanent solution so that the Bueso family never has to experience the inconceivable grief and uncertainty for their daughter's life ever again. USCIS should clarify that reverting to its old policy is not just temporary. And Congress may need to find a legislative solution for Isabel and others in her situation."

The New York Times reported that while deportation proceedings had not been initiated against anyone who had received the letter, it also did not say whether it would continue to grant immigrants extensions to stay in the country or whether the program would be continued after current applications are processed.

When asked for clarification, an agency official told the Times it "is taking immediate corrective action to reopen previously pending cases for consideration." It's also unclear how many other people are in Bueso's situation.

What is clear is that her family received a huge outpouring of support. State Sen. Rob Bonta (D-Alameda) tweeted out videos pleading for Bueso to stay. Both she had her mother interned in his office. Other Democratic lawmakers, including Rep. Nancy Pelosi, called on Trump to reverse the decision. Congress invited her to testify. 

Bueso is used to testifying. A longtime advocate for people with rare diseases, Bueso told the Times that she planned to lobby Congress to find long-term relief for patients and more permanent solutions for immigrants with health care needs.

"Our hearts go out to all of the families involved in this sudden policy change," her family said in a statement. "And we won't rest until they also have continued access to the life-saving medical care they deserve."