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
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
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
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.Enza died on Tuesday, July 28 at 5:17
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
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
Life has been a nightmare without her by my
Now I go to the cemetary to talk to her
With kindest regards and God bless all of you.
~~Rest in Peace~~
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Cristina Talks (RDEB H-S) |
Vincenza's Story (RDEB H-S) | Logan's Story (JEB Herlitz)|
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Copyright2000 Giorgia Pilla
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