Raul

I spent a good part of the day with Raul, the boy with Epidermolysis Bullosa, a condition in which the skin is as delicate as a butterfly's wings, and peels off at the slightest touch.  People with EB develop open sores, lesions, and blisters all over their bodies.

There are five levels of EB.  Raul's twin apparently had the most lethal level, because she died in infancy.  Raul apparently does not, because he is still alive, at 18 months of age.  EB is incurable, though there is a clinical trial involving bone marrow transplantation at the Colorado Children's Hospital, and one of my teammates is hoping to get Raul a medical visa and bring him there.

In the morning Coca, a nursing aide from the Tutova Clinic, came to the Barlad Children's Hospital to show the staff how to change Raul's bandages.  It's an arduous process that can be incredibly painful for Raul, but it has to be done every day, and done right, because of the possibility of infection.

Since he hadn't had a bath in at least a week, Coca decided to give him a bath too, and show the hospital staff how to do that.  Only one nurse's aide showed any real interest in learning how to bathe Raul and bandage him, but we are hoping that Coca will come on staff at the hospital so she'll be there for Raul.

The blisters have to be popped with a hypodermic needle, and lots of salve and ointment applied, before the bandages are applied.

I am not going to show the more grisly pictures here, but suffice it to say that this poor little guy has nasty sores all over his body, including one large  open sore that covers most of the right side of his abdomen, front and back.

After the bath and bandage-changing, Raul took a nap.  In the afternoon I took him for a walk in the hallway, because he is so bored.  He's a very intelligent child, but in the hospital he's only allowed out of his crib if he's on someone's lap in the rocking chair.  It's really not a great life for an active, intelligent 18 month old.  So when we got to the end of the hallway, I thought, I am taking him out on the balcony, so he can watch the world go by.

I had a blanket with me, but when my teammates saw where we were, they brought out a hat and a fleece jacket.  The Romanians sincerely believe that a draft can give you a cold and kill you, and they didn't want the staff to get upset with me for taking Raul outside, even though it was a lovely spring day and he was wrapped in a blanket.  But the staff were all very kind, and said they know he's a very intelligent boy who needs some stimulation.

This is what he got to see . . . .