Political Quotes

“today I am reintroducing a bill for the private relief of Maria Isabel Bueso Barrera and her parents. Ms. Bueso is a Guatemalan national living in Concord, California. She has a rare medical condition, and her removal from the United States would deprive her of lifesaving medical care. Ms. Bueso suffers from a rare, life-threatening disorder called Mucopolysaccharidosis Type VI (MPS-VI), a rare genetic condition caused by the absence of an enzyme that is needed for the growth of healthy bones and connective tissues. Ms. Bueso uses a wheelchair for mobility, has a shunt in her brain, and requires a tracheotomy to help her breathe. In 2003, Ms. Bueso and her family came to the United States at the invitation of doctors who were conducting a clinical trial to treat her condition. That trial led to Food and Drug Administration-approved treatment for MPS-VI. Ms. Bueso now receives this life-saving treatment every week at UCSF Children's Hospital in Oakland, CA, where she unoes a 6-hour infusion of a prescription drug that replaces the enzyme that people with MPS-VI lack. Ms. Bueso has participated in six other medical trials. For the past 10 years, Isabel and her family received deferred action from U.S. Citizenship and Immigration Services so that she could continue receiving the treatments that keep her alive. This treatment is not available in Guatemala. On August 13, 2019, USCIS notified Ms.…”