In a year of disgusting and disheartening stories, this is perhaps the most disgusting and disheartening- the deportation order for Isabel Bueso, a young immigrant from Guatemala who was invited to the United States to participate in a clinical trial for her rare genetic disorder: Mucopolysaccharidosis type VI. Miss Bueso needs continuing medical treatmsent to survive, requiring a respirator to assist in breathing and regular injections of enzymes. These are treatments which she wouldn't be able to receive in the country of her birth.
The Bueso family has been in the United States legally for sixteen years and Isabel has, since playing a crucial role in the clinical trial for which she was invited to this country, graduated summa cum laude from Cal State University East Bay. Isabel Bueso has a tiny and helpless body, but a formdiable intellect and an irrepressible spirit, she is exactly the sort of individual who should at first rouse the protective instincts of anyone with a shred of humanity, and then gain their admiration for her extraordinary achievements. What has happened to our society that would possess our government to send a courageous, intelligent person to their death like this? There are videos of Isabel dating from before the New Cruelty, videos of her addressing an audience at Children's Hospital, her breathing labored but her sense of humor and grace apparent. Another video has Isabel describing her entry into college, her ongoing treatments, and her plans for the future:
At the end of the video, she muses about being married within ten years... the fact that she has lived for so long is a testimony to the medical treatments developed through her participation, and the very idea that the cruelty of a corrupt government could spell her death is abhorrent. This country came to be known as the place to which ill children could come for treatment, a rich and well-educated country in which decent people funded therapies for sick, indigent children. I would like to see Miss Bueso live as long a life as possible, to see her work with wheelchair-bound children, to see her get married on the timeline she envisioned... she deserves better. We deserve better.