Congressman DeSaulnier Announces House Passage of Private Bill for Isabel Bueso
Washington, D.C. – Congressman Mark DeSaulnier (CA-11) has announced the passage of the bill (H.R. 4225) he authored to allow Isabel Bueso and her family to remain in the U.S. The bill would mean that Bueso can continue to receive treatment for her rare, life-threatening disease. The U.S. Senate must consider the bill by the end of the year before it can become 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 well-being. 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.
DeSaulnier urges 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,” said DeSaulnier.
Medical deferred action cancelled
Isabel rose to national prominence when the Trump Administration cancelled medical deferred action. As a result, people like her with rare, life-threatening diseases faced deportation. Isabel came to the U.S. legally from Guatemala in 2003. She came 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. Her participation in the trials has helped identify an effective, life-saving treatment, which the drug manufacturer says Isabel cannot receive in Guatemala.
A summa cum laude graduate from Cal State East Bay, Isabel has become an advocate for patients with rare diseases. Before doctors discovered her treatment, they did not expect her to live past 7 years old. She is now 25.
For more about Bill H.R. 4225, click here.
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