Deportation could mean death for local Guatemalan immigrant with rare disease

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ByEric Thomas KGO logo
Saturday, September 7, 2019
Deportation could mean death for Bay Area immigrant with rare disease
Crowds rallied in two East Bay cities in support of a Guatemalan immigrant who has been receiving life-saving medical treatments here.

HAYWARD, Calif. (KGO) -- Crowds rallied in two East Bay cities Friday in support of a Guatemalan immigrant who has been receiving life-saving treatments here but now faces deportation.

Students and staff members from Cal State East Bay marched the more than one and a half miles to Hayward City Hall. The march was in support of a 24-year-old Concord resident with a rare, often deadly disease.

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"There's no word to describe today how grateful I am for the support," said Isabel Bueso.

An earlier show of support for Isabel took place outside Oakland's Benioff Children's Hospital. The participants are nurses-- some have cared for Isabel over the past 16 years.

"When I heard this story, I was horrified for her personally," said nurse Wendy Bloom.

Isabel suffers from a rare genetic disorder called Mucopolysaccharidosis or MPS-6. Her body fails to produce a key enzyme and there's no treatment for it in her home country of Guatemala.

"(It) affects everything, the heart, the bones, the eyes, the teeth," Isabel said.

Isabel and her mom moved here for a clinical trial of a new treatment in 2003 when she was seven. She receives the life-saving enzyme replacement drug in a six-hour treatment every week.

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The family got regular extensions to stay in the US every two years under the deferred action program, until last month, when a letter from immigration officials arrived saying their latest request was being denied.

Isabel's mom Karla said, "It was such a shock to receive that letter-- it is forcing you to leave the country in 33 days and this is shocking."

"My fear is that I will become weaker and then maybe not live long," said Isabel.

Isabel's story has gone national-- she's even been featured in the latest edition of People magazine. Maybe that's why the feds have begun walking back their deportation letter.

The US Citizenship and Immigration Service put out a statement saying it will "reopen non-military deferred action cases that were pending on August 7. Those denied requests that were pending on August 7 did not have removal orders pending, and have not been targeted for deportation."

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It's possible the family will get another extension, even though the original letter said the decision couldn't be appealed.

Isabel is also scheduled to testify about her plight before Congress next week.