The Trump administration has partially backtracked on an inhumane decision ending deportation relief for people undergoing lifesaving medical treatment, but life remains as uncertain as ever for Maria Isabel Bueso. She’s among the immigrants who last month received a letter informing them there would be no renewal of their medical deferred action, and to prepare to leave the United States in 33 days, and that deadline is now just days away.
Even though U.S. Citizenship and Immigration Services backed down under public pressure and said it would reopen pending applications, BuzzFeed News reports that Maria Isabel and her family have “still received no direction from immigration officials” regarding her status, and “are unclear if they will be allowed to stay past the deadline,” coming up on September 14.
On Friday, Bueso, healthcare providers, and advocates rallied outside UCSF Benioff Children's Hospital in Oakland, California, to demand the administration stop the deportation of people undergoing medical care. They know that for many, deportation will mean death. “Maria Isabel Bueso was diagnosed as a child with mucopolysaccharidosis VI, also known as MPS 6, a rare disorder that can cause dwarfism, clouded vision, difficulty breathing, spinal cord compression, and enlarged organs, among other disabilities.”
Bueso’s participation in a clinical trial as a child helped develop a life-extending treatment she and others with her rare disorder now depend on to survive. But “if Maria Isabel misses one infusion,” her doctor wrote earlier this year as part of her renewal application, “she will have increased joint stiffness. If she were to return to Guatemala, she would no longer have access to the medication and she would die.”
She’s not alone. Last week, civil rights groups launched a lawsuit against the administration on behalf of a group that advocates for 19 people and families affected by the decision to end medical deferred action. The Irish International Immigrant Center’s clients “include children seeking treatment for illnesses such [as] cancer, cerebral palsy, muscular dystrophy,” as well as their parents, who have now “been forced to wrestle with devastating decisions including whether to leave children behind in the United States to continue receiving life-saving care.”
This is a decision no parent should ever have to make. Back outside the hospital, Wendy Bloom, a nurse who has helped treat Bueso for over a decade, called her deportation, “a horrifying example of cruelty.” It’s true, because the Trump administration didn’t have to do this. “It’s horrifying and, as a nurse, you understand the stress of having to go through this and deal with a sick child,” she said.
“There’s no Plan B,” Maria Isabel’s mother, Karla Bueso, said. “I can’t even think of the possibility that this isn’t fixed. We’re talking about someone who needs this treatment to live.”