[Congressional Record Volume 168, Number 121 (Thursday, July 21, 2022)]
[House]
[Page H6942]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        SUPPORTING ISABEL BUESO

  (Mr. DeSAULNIER asked and was given permission to address the House 
for 1 minute and to revise and extend his remarks.)
  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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