OAKLAND, Calif. (KTVU) - Isabel Bueso received what she and her doctor say could very well be a death sentence.
It came from the United States Citizen and Immigration Services— a deportation letter.
" I cried a lot. I was shaking. I was pale from the shock," said Bueso.
Bueso, 24, is a native of Guatemala who has an extremely rare and potentially fatal genetic disease called MPS-6. It's affected her growth, breathing, heart, spinal cord and much more.
"My body doesn't break down sugars," she said.
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.
She was 7 years old at the time. Every Friday, she goes to UCSF Benioff Children's Hospital in Oakland where she spends all day getting treatment.
She says it's what is keeping her alive, but her access to the treatment may soon be denied.
That's because the federal government without warning eliminated the medical exemption earlier this month.
About two weeks ago Bueso received a letter from immigration saying: "Your period of authorized stay has expired. You are not authorized to remain in the United States."
Her family was given 33 days, until Sept. 14th to leave. Bueso's doctor said without the treatment she won't survive.
"I am going to become weak. For sure. The energy will go lower," she said. "And I'm just going to die. And I don't want to because I have dreams and goals I want to do."
Her mother, Karla Bueso, said she can't sleep because of the stress.
"They have the power to change it again," she said.
ICE issued a statement saying it, "reviews each case on its own merits and exercises appropriate discretion after reviewing all the facts involved."
Martin Lawler, Bueso's attorney, said he is appealing and believes Congress needs to step in.
"Hopefully, people will realize the gravity of this situation for this family and others in similar situations and reverse the policy," he said.
Bueso said her life is in the U.S. She graduated with honors from Cal State East Bay and is an advocate for others with rare illnesses.
"Before you advocate for others. Now I find I have to advocate for my own life. It's scary," she said.