Washington, DC – Today, Tuesday, Sept. 3, 2019, Congressman Mark DeSaulnier (CA-11) announced the introduction of a private bill (H.R. 4225) to allow Maria Isabel Bueso, a resident of Concord, California, to remain in the United States to continue to receive treatment for her rare, life-threatening disease. Following a Trump Administration change, Isabel and her family face deportation. Yesterday, the United States Citizenship and Immigration Services (USCIS) said it will re-open deferred action cases that received denials like Isabel’s but, did not say whether it would reverse the policy change that led to the cancellation of deferred action.
“A few weeks ago, families were blindsided when they received notification from USCIS that they were being forced to leave the country within 33 days. Re-opening cases is no guarantee they will be allowed to stay, and it is not a permanent solution. These families need and deserve decisive action,” said DeSaulnier. “I am introducing legislation that would provide Isabel and her family with permanent resident status so they can remain in the United States without fear of removal. The Bueso family has followed every rule – they came here legally, paid their taxes, and Isabel’s participation in groundbreaking clinical trials has given hope to Americans with rare diseases. I will do everything in my power to help Isabel and her family remain here.”
“While I am thrilled that my deferred action status is being reconsidered, I was born with MPS 6; so, neither my condition nor my critical need for lifelong, weekly treatment will change in another two years’ time,” said Isabel Bueso. “We need to work together to find a more permanent solution that gives families like mine the guarantee that our lives won’t continue to be threatened. Congressman DeSaulnier and Senator Feinstein’s bill to give my family permanent status is part of that solution,” said Isabel.
“We are encouraged to hear that the administration is willing to reconsider our medical deferred action case,” the Bueso family stated. “We see this as a first step in revisiting our status as U.S. residents and will be working with lawmakers to find a more permanent solution that guarantees Isabel’s life is never put at risk again. Our hearts go out to all of the families involved in this sudden policy change and we won’t rest until they also have continued access to the life-saving medical care they deserve. Thank you to everyone who supported our family during this time – our hearts are overflowing with gratitude,” the Bueso family concluded.
Isabel came to the United States legally from Guatemala to receive treatment for Maroteaux-Lamy Syndrome, also known as Mucopolysaccharidosis Type VI. Her participation in drug trials helped identify an effective, life-saving treatment, which the drug manufacturer says Isabel cannot receive in her home country of Guatemala. Isabel and her family have lawfully resided in the East Bay since then, where she recently graduated summa cum laude from Cal State Easy Bay. Before her treatment was discovered, Isabel’s life expectancy was seven years old. She is now 24.
In a comment with a video posted on his Congressional Facebook page on Saturday, DeSaulnier wrote, “We have a sociopath in the White House who acts more like a mobster than the President. Our office is working hard to #SaveIsabel and stand up for immigrants with medical conditions that the #Trump Administration has targeted.”
In addition to introducing a private bill, Congressman DeSaulnier was joined by Senator Kamala Harris (D-CA) in sending a letter petitioning the Acting Secretary of the Department of Homeland Security, Kevin McAleenan, to re-review the cases of the Bueso family. He also co-led an effort with Immigration and Citizenship Subcommittee Chairwoman Zoe Lofgren (D-CA), Representatives Ayanna Pressley (D-MA), Judy Chu (D-CA), Lou Correa (D-CA), and Senators Edward Markey (D-MA) and Senator Elizabeth Warren (D-MA) to DHS, ICE, and USCIS demanding answers on USCIS’s decision to end consideration of non-military deferred action requests, including medical deferred action. In the letter, which was joined by over 100 additional lawmakers, he called on the agencies to reverse this decision and turn over any documents discussing the policy change by September 13, 2019.