Rafaella Lily was born two weeks past her due date on November 19, 2007. She was a beautiful baby who happened to be missing skin on her feet and the back of one hand. We were told she was “overcooked” and we shouldn’t worry about it. Six hours later she was taken to the neonatal intensive care unit (NICU) and we started to worry. I would later describe the first time I saw her the next morning as when the earth dropped from under my feet. We spent the next thirty four days in the NICU.

We were lucky in that a dermatologist was on call and had experience with Epidermolysis Bullosa. A name we would come to fear and later hate. I say we were lucky because another family that we have become good friends with, and has a son with the same affliction who is a month older than Rafi, was unable to obtain a diagnosis just across town in another hospital. Getting the diagnosis quickly allowed us to make sure Rafi stayed in the hospital long enough to qualify for Medicaid. It’s a long story, and we had to work with the doctors, but we were able to not get her discharged. Because of the qualification to Medicaid, we were entitled to daily nursing, and having our doctor and prescription co-pays covered. NY Medicaid has been very helpful to us and has allowed us to have some great nurses in our home.

Rafi is now just over two years old. We left New York City and settled down in Minneapolis just before her second birthday. We felt it best to acclimate her to a new home before she was admitted to the hospital for a month or more, and then limited to her outside activities for some time after she was discharged. This would become her home and we hope that will give her some comfort. When we were in New York City, she played with her friends in an organized play group and went to music class. She still talks all the time about her friends from home and even Skypes with them. She is very much like any other two year old. Jackie has done everything possible to give her the most normal life she could have. Rafi is incredibly verbal and she uses her language skills to push any and all limits we try to set for her. For all intents and purposes, she is just another two year old.

But she is different. She didn’t walk until she was almost two years old. Thank you to John Smith (her occupational therapist) and Erin King (her physical therapist) for all the hard work and caring. You guys should see her now cruising around our Minneapolis apartment. She can only eat very soft food and gets most of her nutrition from pediasure and formula. She walks around bandaged from head to toe in very specialized and expensive bandages. She probably walks around with over $450 worth of supplies on each day (and she is only a small two year old – imagine the cost when she doubles in size and has more affected areas). For two hours every other day, little Rafi sits mostly patiently and with little complaint, on a massage table while we take off her bandages, address any new wounds, give her a sponge bath and then apply creams, bandages, gauze and dressing retainers. On a positive note, we think the bath and bandage changes have given her the opportunity to develop a very impressive attention span.

Jackie and I have so much respect and admiration for our little Rafi. With horrific wounds and/or blisters on her feet, she walks around, and never wants to sit down. I don’t know how she does it. She endures baths with diluted vinegar or bleach (we rotate between the two) when she has up to 75% of her body covered in wounds. While she gets many smiles from people on the street or in stores, she gets stared at and avoided at times by other children and people. Yet, she continues on and enjoys life. It’s a testament to her strength, her determination, her courage and her attitude. We can’t get enough of her.