Raul

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, and they have been very open to learning. Children with EB are often called "butterfly babies" as their skin is as fragile as butterfly wings; they get blisters and wounds from pressure and friction. These blisters can occur on any membrane (skin, eyes, GI tract, etc.). Raul is currently refusing to eat more than one bottle per day, likely because of the extreme pain he is in. We give him infrequent Advil, but his pain is much greater than that can alleviate.

Despite how much the staff may care about him and want to help, 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. 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, 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. Please spread the word about Raul's story, as we need all the help we can get to get Raul what he needs. Raul's story and his chance for international medical care was made public in Romanian media before the visa was denied, and for them to have to do a retraction will not look good for the U.S.! The one thing that reassures me is that he has Coca (an aide from Tutova, who is now helping in Barlad) to love him and take care of him until we can bring him here.