For those who don't know his story, Raul has Epidermolysis Bullosa. He is 19 months old right now, and has lived his whole life in hospital isolation. Due to financial hardship, the hospitals are not able to purchase the supplies he needs, and so they isolate him to try to help prevent infection. Knowledge about EB is not common in the area where Raul lives.
The tests and treatments that he needs are not available to him in Romania, and that is why we began pursuing an international medical visa almost one year ago (as you know if you have been following the blogs). It took an entire year to get everything straightened out with both the Romanian and American hospitals, and to help his parents to understand his condition and what is available to him abroad. We thought we had everything figured out, but after two ten hour round-trip visits to Bucharest this week, Raul has been denied a medical visa. The reasons they gave being, 1: they did not believe we would bring him back despite signed legal documents (they didn't think the parents were involved enough in his life to count as the necessary incentive to return), and 2: the parents do not qualify for visas to the U.S., and somehow that means Raul does not either even though they will not be traveling with him.
We were advised to try to get him humanitarian parole, and are also getting U.S. senators involved. Raul is refusing to eat at this point, and desperately needs more intervention. We need to get him here as soon as possible to treat his severe malnutrition and evaluate his EB. We may be at the point where a G-tube is necessary for feeding, which is unfortunate, but he is just not eating. He will also be screened for the bone marrow trial!
We should be able to submit his humanitarian parole paperwork this week, and with the help from the senators we are hoping he could be here in a couple weeks!