In 30-some years as an immigration lawyer, I have not seen a more compelling justification for a private bill than the way the administration has treated Maria "Isabel" Bueso.

When Isabel was seven years old, she came to the United States from Guatemala at the invitation of American doctors who needed her for clinical trials of a new treatment from a rare genetic disease, Mucopolysaccharidosis VI, which only occurs in one out of 1,505,160 births. It causes dwarfism, clouded vision, and spinal cord compression, among other abnormalities.
It also shortens a person's life span. Without treatment, people who are as severely affected as Isabel usually only survive until late childhood or adolescence.
Isabel was admitted to the United States on the basis of a deferred action program for aliens who need medical treatment in the United States.
The trial did not produce a cure, but it led to the development of a medication that can increase survival by more than a decade.
Isabel and her family remained in the United States to continue the treatment, which her parents paid for with private medical insurance. The treatment is not available in Guatemala.
Isabel and her family have lived here legally for 16 years.
Isabel is smart, lively, lovely and full of plans. She has graduated from college with honors and is an active member of her community. Her parents own a home, pay taxes, and they also are active in their community.
Last month, U.S. Citizenship and Immigration Service (USCIS) announced that it had changed its policies and would no longer accept deferred action requests for the medical treatment program, except those made by certain military members and their families.
On Aug. 13, USCIS denied a request Isabel had made to extend her deferred action status and informed her that if she and her family did not leave the United States within 33 days, deportation proceedings would be initiated.
This was described by her doctor, her lawyer, and her mother as tantamount to a “death sentence.” The treatment she receives — and that her participation helped to develop — is not available in Guatemala.
Congressional reaction to terminating the program
Published originally on The Hill
Nolan Rappaport was detailed to the House Judiciary Committee as an executive branch immigration law expert for three years. He subsequently served as an immigration counsel for the Subcommittee on Immigration, Border Security and Claims for four years. Prior to working on the Judiciary Committee, he wrote decisions for the Board of Immigration Appeals for 20 years. Follow him on Twitter @NolanR1