Everything I've read on EB (via the internet) brought back memories of the trials and tribulations that Vincenza (for short we called her Enza) went through growing up. She too had difficulty swallowing. I also remember when her nails fell off. Which was a blessing in disguise. She no longer was able to cut up her face with her nails. As I was reading your web site, I began to cry. I know how difficult it is to see someone that you love so dearly suffer, particularly a child. I pray everyday that a cure is found for this horrible illness. I hope that Jessica does have a chance to become independent and fulfill her dreams. I have a feeling that she will. These children are fighters. They have such strength because of all that they must overcome each and everyday.
Enza and I were 6 years apart.
There was only the two of us. It's horrible without her, being left alone as the only child. We were inseparable. As children she wasn't able to go outside and play. I stayed with her and quickly learned to play games where she would not get hurt. There are five bedrooms in our home, but we shared a room up until high school so that we could stay up all night and talk or play footzies.
When she entered elementary school, my parents chose to place her in our public elementary school. They had the option of two schools. They chose the one with one level so that she did not have to climb stairs. My mother went to work in the school cafeteria so that she could always be near her if she did indeed need anything. Enza had problems with choking and with constipation.

While in elementary school my mother heard of a chemist, named Pavel Kozak who lived in Spain. Apparently he helped people with EB. He was very expensive however. The community collected donations and Enza was on national tv. We were able to collect a significant amount of money to send her. She spent a few months there with my mother until the money ran out. He made his own creams and put her on a special diet. She came home and my father and I were amazed. She had improved dramatically. In fact Enza returned several times. The last time being 1995. The doctors wanted to amputate her arm because her arm was separating from her shoulder. My parents saved thousands and thousands of dollars and sent her to Spain once again. She returned and her arm had healed completely within weeks.
She had several operations on her hands because her fingers had webbed together. She still managed to learn to play the piano and she was very proficient on her lap top computer.
Enza also had to have all of her teeth removed and she had fake ones put in. She was loosing her teeth and I remember how she would cry for days because she didn't want people to see her with teeth missing.
Throughout school Enza ran for class treasurer. She was on the Principal's Advisory Commitee. She was always involved. Although many students were scared to become friends with her. She only had a few good friends that adrored her. She had the most vibrante personality. Enza always had a smile on her face, even though she was hurting. I will never again meet anyone who could tell jokes like she could or make me laugh like she could.

After high school Enza wanted to attend college, but was unable to because she was not well. At this time she began receiving SSI and a nurse was at our home Mon-Sat. 9-5. I will never forget seeing my mother sitting on the porch drinking a cup of coffee. I had never actually seen her sit down and relax before. The nurses that my sister had were wonderful, she was having contact with people rather than sitting in front of the tv all day. (Her blood count was low and she was weak all the time).
Two years later the doctor gave Enza the ok to attend college. My mother wanted her to attend desparately. My father was opposed. She made up her mide to attend a private all girls school 45 minutes from our home. She also decided to board. At first my father was there everyday. My mother would go on her days off. Enza loved it there. I was so concern that people would be scared and not make friends with her. As the first semester went on I would call her room and she was either out with friends or had a roomfull of friends. She had several nurses at college. One would come to change her bandages in the morning and make her breakfast. Another would come in the afternon. And another would come in the evening to change her bandages again and to make dinner.
I took Enza out for her 21st bithday and she rounded up so many friends from her college that night. She danced all night, as her friends danced around her so that no one would bump into her. We had the times of our lives.

This past summer Enza was home from college. She was excited because the 2 years that she had spent in college she had always been on the deans list. I'm a teacher and Enza wanted to become a college professor. We made plans for our future. We would talk about where we wanted to teach and how we wanted to help kids in need. She was an inspiration to all because of her strength and intellegence.
This past July Enza's luggage was packed and ready to go. She had an appointment with a doctor in Italy who was going to operate on her hands. She was excited. Four days before her departure she woke up and she was jaundice. We immediately took her to the doctor. He took blood exams and assured us that the test results would be back by Monday, which was her departure date. The doctor said that she probably had hepititis. The week before Enza was at the doctor and received a full physical. She needed a clean bill of health before the operation. She did receive one. I don't know how. Monday came and the results were not in and Enza was still jaundice. The doctor assured us that it was nothing. After barging into his office and insisting that he see her again, he immediately admitted her to the hospital. The doctors told us that her liver was not functioning properly. No one ever let us know how serious it actually was. My mother sleep at the hospital with her every night. By Thursday the doctors still knew nothing.
I played cards with Enza Thursday night and she beat me at every game. When I arrived at the hospital Friday morning my mother was hysterical. Enza no longer recognized us. She was hallucenating. The hospital ws happy to see her leave. They transported her to another hospital because they told us that she needed a liver transplant.
When we arrived at the hospital they told us that she was not a candidate. They also told us that she was going to die. That night she fell into a coma. We sleep on the hospital floor every night. She was in ICU and my mother was the only who could be with her at night. She had to stand however because they would not allow any chairs in ICU. We were only allowed in 4 times a day for half an hour at a time.
While Enza was in a coma I spoke with her and I know that she heard everything that I said. I said my good byes and she cried. When we read her her last rights she began to cry. I think that she knew. It was a nightmare. My parents had to sign papers not to recessitate her, because they said they machines to recessitate her would kill her and she would die a painful death.

Copyright2000 Giorgia Pilla
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