Washington, DC – Congressman Mark DeSaulnier (CA-11) will be joined by Isabel Bueso, rare disease advocate and Concord resident, at tonight’s State of the Union Address. Bueso rose to national notoriety recently as the face of the Trump Administration’s cancellation of medical deferred action, which led to people like her with rare, life-threatening diseases facing deportation.
“Isabel stands for everything that is right in this country. She is a young woman who while fighting for her life is also fighting for the lives of others as a medical trial participant, a rare disease advocate, and an unforeseen voice for immigrants impacted by the Trump Administration’s cruel policies. While it is clear the President is acting arbitrarily to demonize people who do not look like him, he and his allies should understand that there are humans behind every misguided policy they make. Isabel is one of those humans,” said Congressman DeSaulnier. “Isabel is selfless, fearless, and the kind of person I want by my side in this fight and at the State of the Union. She deserves to stay in this country, and I am proud to lead her fight in Congress.”
“I am so grateful to Congressman DeSauliner for his continued support to ensure medical deferred action status remained an option for families like mine,” said Isabel Bueso. “It is an honor to attend the State of the Union as his guest as I look forward to continuing to work with our legislators. My critical need for care will not change in another two years, so we need to find a permanent solution that guarantees our lives won’t continue to be threatened.”
Isabel came to the United States legally from Guatemala to receive treatment for Maroteaux-Lamy Syndrome, also known as Mucopolysaccharidosis Type VI. Her participation in medical trials helped identify an effective, life-saving treatment, which the drug manufacturer says Isabel cannot receive in her home country of Guatemala. Isabel and her family have lawfully resided in the East Bay since being invited here for those trials, graduating summa cum laude from Cal State East Bay. Before her treatment was discovered, Isabel was only expected to live to 7 years old. She is now 24.
Since Isabel and her family were denied deferred action, Congressman DeSaulnier has actively worked to protect them from similar action by the Administration, including by introducing a private bill (H.R. 4225), calling for a House Oversight and Reform Committee hearing, sending a letter with Senator Kamala Harris (D-CA) petitioning the Department of Homeland Security to re-review their cases, and co-leading an effort with over 100 lawmakers to demand answers from the Administration on this policy change.
A livestream of Mark and Isabel will be available on Congressman’s DeSaulnier’s Facebook page at 2:45 PST.
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