“Butterfly children” is the name given to children afflicted with the incredibly rare genetic skin disorder Epidermolysis bullosa, or “EB”. EB causes extreme fragility of the skin or other organs. Any rubbing or friction can cause the skin to erode and blisters can form at the slightest touch, or sometimes with no touch at all. The friction caused by changing a diaper or picking the child up is all it takes to cause serious wounds. The skin of a child suffering from EB is said to be as delicate as the wing of a butterfly.
Raul is a butterfly.
Epidermolysis bullosa has no cure and many sufferers don’t survive to adulthood.
Raul used to live in the Tutova Clinic in Romania. The clinic was more or less an orphanage, filled with children who had no parents or whose parents could not support them financially. Raul was placed in the clinic when he was four months old because his parents did not have the means to care for him at home. Caroline Ruhl ‘09 came to Tutova as a volunteer to provide care for the children in the understaffed clinic. He was four months old; she was nineteen. It was love at first sight.
When she first met Raul, Caroline was following a dream she’d had since the age of 14, to combine a desire to help children with her love of travel. Caroline started WMS’s division of China Care, a foundation devoted to providing medical care to Chinese orphans with life-threatening health conditions, while she was a student here. She recalls, “WMS encouraged and supported my community service efforts. I was able to do a senior project focusing on child development in institutionalized children, where I spent part of the spring semester in Romania, which has helped me to understand some of Raul’s developmental challenges.” Since then, her travels had taken her to South Africa, Swaziland, Lesotho, Thailand, China, and Russia. Upon meeting Raul, she began a different kind of journey.
Something about Raul, his fragility, his impish smile, his pain, the strength in his eyes, called out to Caroline and she knew that she had to get him the care he needed.
At the time, Raul’s prognosis was grim. His caretakers knew little about EB and they did not have the resources to bandage his wounds regularly, medicate him, or relieve his pain. He was severely malnourished, unable to eat with his mouth due to blistering and in a clinic too underfunded to avoid the gastric feeding tubes his condition required. He was kept in isolation to prevent infection and his parents visited rarely. His health was deteriorating.
Caroline got to work right away, contacting American experts on the disease in order to create specialized care for Raul and improve his condition. She found donors back in the US who were willing to donate bandages to keep Raul’s wounds clean.
But it became clear that if Raul was to have a shot at survival, he would need to be brought to the US. Caroline began a campaign to convince Raul’s parents to allow Raul to come back to the United States with her. With Caroline as his guardian and US medical care within reach, Caroline believed he had a chance. Eventually, his parents did too. They gave Caroline medical power of attorney over Raul, and she immediately applied for a medical visa.
Obtaining a medical visa was a long and arduous process, lasting almost a year, which was ultimately fruitless when the request for a medical visa was denied. Fortunately, where the visa failed, Humanitarian Parole succeeded, and Raul was brought to the States, where his Humanitarian Parole won him charity medical care at Massachusetts General Hospital and Children’s Hospital Colorado.
When he arrived at Children’s Hospital Colorado, Raul was two years old and weighed only fourteen pounds. Raul began to fight back and Caroline, at the age of 20, became a guardian and a mother.
Raul’s battles continue today. He’s been in and out of hospitals. He is in near-constant pain. He struggles with infection. His wounds itch as they heal, and his natural impulse to scratch only makes matters worse. He cannot walk without the aid of a walker. Neurological delays inhibit his speech, and he still eats via gastric feeding tube. On top of it all, Raul’s lack of U.S. citizenship prevents him from receiving health insurance, so all medical supplies, from bandages to medication, must be received through donation or purchased out of Caroline’s own pocket. The next step for Raul is DNA testing, so that Caroline can discover the full extent of his disease for better understanding and treatment.
Throughout Raul’s battles, however, there are victories. He has gained weight and become stronger since he first arrived in the US. His skin is improving under Caroline’s loving care. He scoots around in a walker or wheelchair and plays with the Ruhl’s family dog, Teddy. He attends school and speech therapy, and he does well. He recently celebrated his third birthday. He’s a bright, happy child, and Caroline makes sure to give him as active a life as she can. Her love and devotion to Raul, and her family’s love and devotion to Raul, is nothing short of incredible. For them, every day is a fight, and Caroline is there, fighting for her Romanian butterfly, every single day.