Supporting Isabel Bueso

Floor Speech

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Mr. DeSAULNIER. Mr. Speaker, I rise today to tell you about a remarkable constituent, Isabel Bueso. Isabel came to the United States legally in 2003 from Guatemala as a small child to receive treatment for her rare disease, known as MPS VI.

She was invited here to participate in clinical trials to help research and identify lifesaving treatments for her rare condition. Thanks in large part to her participation, the FDA approved a treatment, which the drug manufacturer says Isabel cannot receive in her home country.

Before her treatment was discovered, Isabel's life expectancy was 7 years. Now, she is 26 years old, having survived far beyond that, and helped others to survive because of her participation in this treatment trial.

The previous administration unexpectedly canceled the program that Isabel and her family were under, and they were told that they had to leave in 33 days or risk being deported. Thanks to the American public and their outrage at this decision and others like it, Isabel and her family were able to stay, and it was reinstated.

We have a private bill that is now over in the Senate, and we hope the Senate will approve this so Isabel and her family can stay here in the United States safely.

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