Raul was born in Barlad, Romania, on October 19th 2009. He was born with the rare genetic condition Epidermolysis Bullosa (EB), as was his sister who passed away at one month old. He lived in the hospital for four months, when he was then transferred to Tutova Clinic. I met Raul the day he arrived in Tutova, and immediately fell in love. At the time he was in very poor condition, and EB was not widely known in the area. I was in contact with doctors in the United States during my time in Romania to help find ways to improve his quality of life. Once home I began working on getting Raul a medical visa to come to the U.S. for a short time to receive more expansive testing and wound care. Raul was loved by his caretakers in Romania, but due to the lack of knowledge about EB he was isolated, and did not receive optimal care. After a lengthy, year process, Raul was denied a medical visa by the U.S. Embassy in Bucharest. I came home from Romania after the denial, and began the application process for his Humanitarian Parole. Thankfully, this was granted in a matter of weeks, and in July 2011, we were able to bring Raul here from Romania! We spent almost five months at Colorado Children's Hospital receiving care for Raul from their EB specialists before returning home to Boston. Raul was granted permanent residency in December 2013.
In September 2015 we traveled to Minneapolis, MN, for Raul to take part in a trial for his EB. The trial involved low dose chemo, radiation, and a bone marrow transplant. Raul had his transplant on October 6th, 2015. Shortly after he went into kidney failure, and became dialysis dependent. He also had VOD, and continues to have problems with high bilirubin. Raul was later diagnosed with what we believe to be either TTP or aHUS, though genetic results are still pending on those. We have been in the hospital for four months, and most recently Raul has been diagnosed with a rare life threatening condition called HLH. We do not know at this time if it is genetic or not, but have begun treatment. Treatment involves continuing his CSA, starting Decadron (steroid), and starting Etoposide (chemo). These issues may or may not have happened eventually without the transplant, it is impossible to say. As far as the transplant goes, his engraftment dropped a bit at +100 days, but the doctors believe that even lower percentages of donor cells can be beneficial to slowing the progression of EB.
