Washington, D.C. – Today, Congressman Mark DeSaulnier (CA-11) announced that the U.S. House of Representatives passed the bill he authored to allow Isabel Bueso and her family to remain in the United States so Isabel can continue to receive treatment for her rare, life-threatening disease (H.R. 4225). The bill must be considered by the U.S. Senate by the end of the year to be signed into law.
“I have been honored to lead Isabel’s fight in Congress and am delighted the House has passed this much-needed bill. For over a decade, Isabel and her family lived free of the fear of being deported, which rightfully gave them the space to focus on Isabel’s health and the family’s wellbeing. After having that security taken away from them by the Administration, my bill would give Isabel and her family permanent peace of mind and allow Isabel to stay in the United States to continue to receive life-saving treatment as long as she needs,” said Congressman DeSaulnier.
“I am grateful the House passed our bill that will allow me and my family to stay in this country permanently and continue with my medical care. I look forward to the Senate vote,” said Isabel Bueso.
“I urge the Senate to act swiftly to alleviate the Bueso family’s uncertainty by the end of the year. If they do not, we will renew our fight in the new Congress and will not stop until they have the permanent solution they deserve,” continued Congressman DeSaulnier.
Isabel rose to national prominence when the Trump Administration cancelled medical deferred action, which led to people like her with rare, life-threatening diseases facing deportation. Isabel came to the United States legally from Guatemala in 2003 to receive life-saving treatment as part of a medical trial for Maroteaux-Lamy Syndrome, also known as Mucopolysaccharidosis Type VI. Since then, she and her family have resided lawfully in the East Bay and her participation in those trials has helped identify an effective, life-saving treatment, which the drug manufacturer says Isabel cannot receive in Guatemala.
Isabel is a summa cum laude graduate from Cal State East Bay and an advocate for patients with rare diseases. Before her treatment was discovered, Isabel was only expected to live to 7 years old. She is now 25.
