In 2009, Raul was born in rural Romania with severe RDEB, where he lived in isolation in hospitals and institutions until he was 20 months old. At that time he was approved to come to the U.S. for medical care, and he is now a permanent resident. I first met Raul when he was 4 months old. A tiny baby with large areas of missing skin, kept alone in an isolation room with very little contact and stimulation. I started the process to bring him to the U.S. almost immediately, but it was a lengthy process, and we faced many obstacles. After arriving in the U.S. Raul spent five months out in Denver receiving care from their EB specialists. Much of that time was spent inpatient due to how sick he was when he arrived.
Raul continues to have large open wounds, many that have not healed since birth. He lives with constant pain and frequently suffers from infection. He is hospitalized every few months for infection, esophogeal dilations, and anemia. He is unable to walk, or even put weight on his legs, but he has learned to use a manual wheelchair for school! Raul also has developmental delays; both due to neurological issues, and his experiences in Romania. Raul is a brave boy with an amazing sense of humor! Despite all that he goes through, he is happy and always keeps us laughing! He loves all things trucks, trains, cars, and any other vehicles!
Due to Raul’s non-healing wounds/other complications, we would love to be able to see one of the EB specialists again, but our insurance does not cover out of state care. We are currently struggling with finding appropriate care for his severe wounds in state. Our insurance also does not cover equipment, which is essential to Raul since he is unable to stand or walk.