Ordered Out of US, Woman Faces Death Without Treatment

Isabel Bueso arrived 16 years ago to be a subject in a trial
By Bob Cronin,  Newser Staff
Posted Sep 2, 2019 1:15 PM CDT
Deportation Could Mean Death for Woman With Rare Disease
Isabel Bueso.   (YouTube)

Immigrants facing deportation from the US and those seeking asylum here have feared for their safety—but Isabel Bueso fears for her health. She has a rare disease, mucopolysaccharidoses, for which she receives treatment in Oakland that she couldn't get back in Guatemala. Bueso, 24, came to the US when she was 8 to be treated in a trial. In a letter dated Aug. 13, the East Bay Times reports, Bueso and her family were notified by Citizenship and Immigration Services that they have to leave the US within 33 days. Receiving the order "was like being hit with a bucket of ice water," her mother Karla said. "Like the whole world was collapsing." Missing more than one weekly infusion, her doctor says, "will lead to death."

Bueso is a wheelchair-bound dance instructor, per KQED. She also graduated summa cum laude at Cal State University East Bay and advocates for people with rare illnesses, sometimes as a lobbyist in Washington. "Now I feel like I'm advocating for my own life," she said. Mucopolysaccharidoses damages the organs, including heart, lungs, and central nervous system, according to the NIH; physical and cognitive ability also can be impaired. For 16 years, Bueso's infusions have been covered by private insurance. A pharmaceutical company and hospital still monitor to ensure the FDA-approved drug is working. The Trump administration is now refusing extensions for immigrants who have been allowed to stay under "deferred action" exemptions that include medical treatment. Her congressman and senator are appealing. (More deportation stories.)

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