EB and Me
  My life as a butterfly child   
I was born on July 4th, 1983. Being born on Independence Day, of all days has always had a special meaning in my heart. Who would ever think that a baby, born with no skin on her leg and covered with blisters could ever grow up to be an independent, strong women? Certainly not the doctors who told my mom I wouldn't live past the age of two. I have proved them wrong, and continue to do so as I never give up my quest to be independent. But it's taken a lot of tears and bumps in the road to get here and every day is a struggle. However, I've grown up with a loving, supportive family and I'm ready to become the independent women that seemed so impossible to achieve that July afternoon.

Let's back up shall we, and start at the beginning.
My mom, Cindi, was a single mom, raising my big brother Jose.
She worked at a bank and met my dad in a pool hall. He didn't speak a word of English, but his friend interpreted for them. My mom happened to be taking some college classes to learn Spanish, so she soon became fluent and was able to communicate with my dad. My mom, and dad Abelardo, fell in love and moved in together. They wanted a baby... and of course they got more than they bargained for. She was 6 months pregnant with me when she found out I was a girl. My mom had always wanted to have a daughter named Christina, and was excited to learn it was also a spanish name, so my dad liked it also. All you do is take off the "h" and make it Cristina.
When it was time to have me, my mom went to the hospital and found out I had had a bowel movement in the womb. So they tried to deliver quickly because they were afraid it would get into my eyes etc. She said it was a delightful birth, but as soon as I came out she went to touch me and the nurse yelled, "No don't touch her". About this time my dad actually passed out in the delivery room! We're not sure if it was from the normal excitement of childbirth, or seeing my skin that caused him to faint. He came to quickly though.They eventually wheeled my mom into recovery and took me elsewhere without letting her see me.
It was a quick diagnosis, thankfully. An hour after my birth, a doctor came in and told my mom I was born with Epidermolysis Bullosa. He didn't explain what EB was exactly and my mom did not realize how severe a skin disease could be. She figured, so what, she may need some special cream or something for her skin, that's all.
My mom was going to buy a house and it was closing the next day, so she called her real estate agent and said "We can't buy the house, there's something wrong with my baby."
I was born at Sharp Memorial Hospital in San Diego, California, and was then moved to the Children's Hospital where I stayed for 40 days. I was in the NICU for 30 of those 40 days. While I was there, a geneticist named Marilyn Jones had a meeting with my parents and explained EB. Although they had not done the skin biopsy yet , they thought it was probably the Recessive Dystrophic form. She also estimated I'd have a lifespan of only 2 years. She explained genetics and how the recessive forms are passed on and my dad began feeling terrible because he thought he had caused it. My mom had a healthy baby already, my brother, so my dad thought it was his fault I was born with EB.
My mom visited me everyday at the hospital. I had no skin from my right knee to my ankle, and big yellow blisters everywhere else and in my mouth. For the first few weeks, I was left naked, with gobs of ointment on my open sores. They eventually started bandaging me. My mom wanted to breast feed me but she couldn't because of all the blisters in my mouth. They had put a line in my belly button for me to eat through right when I was born. One day my mom was rocking me in a chair and my line fell out and started squirting blood. My mom freaked out of course. The line can not be put back in so it was a miracle that I started eating on my own that day. They cut the hole of the baby bottle nipple a bit bigger so I wouldn't have to suck so hard and cause blisters. I started doing well and they moved me out of the NICU. I stayed about another 10 days in the hospital, then they told my mom she could bring me home. She didn't know what she was going to do with me. They sent us home with lots of bandages and my mom then became an "EB Momma". She changed my bandages twice a day and soon became an expert in my skin, as every EB mom does.

When I was two, my mom noticed some strange white puss pimple type things on my skin, and in my mouth. The doctor checked them and it turned out to be Herpes Simplex. It was cleared up easily with medication, but my dad again felt bad that he had somehow given that to me also, due to his past cold sores.
My mom found the book by Lillian Sparks (another EB mom) called "Tough Cookie" and decided to contact her. Lillian told her about a biochemist in Spain named Dr. Kozak who had a treatment for skin disorders. So my mom decided to raise some money to get us to Spain.
At the same time, she had applied to SSI for help, but they had turned me down because my condition was not "severe" enough. She was outraged but didn't know what she could do to change their mind. She decided to contact the local paper about it to atleast raise awareness about EB.
The reporter came and interviewed my mom and asked her what kind of help she was getting. When she mentioned about SSI turning us down, the reporter was also outraged and what my mom thought would be a tiny story in the paper about EB, turned into front page news in the San Diego Union! The headline reading  "U.S. refuses to aid child with lethal skin ailment"
As soon as the article came out, reporters from channel 8 and 10 were calling my mom to do stories on us.
This article was followed by 3 more articles about us and EB, including one about our trip to a DEBRA conference.

  Click HERE to read the news
  articles about me and EB!

My grandpa is a retired fireman, and the fire department decided to donate $5,000 to us, to help us get to Spain for the treatment.
Shortly after, the California Highway Patrol also made a donation and even set up a barbeque. They sent my mom money to buy me a cute dress and even sent a limo to pick us up.
When we got there my mom discovered that hundreds of people were attending.
They introduced us to the crowd and presented me with a cabbage patch doll which sent the crowd into total amazement because they were very popular at the time and nearly impossible to find.
While we had $10,000 all together, it would cost $30,000 to get to Spain. But the donations kept coming, they were sent to her work. Donations ranged from $1.00 to $1,000. Everyone wanted to help any way they could. After only a couple short months, we had raised enough money to go to Spain.
We were in Spain for a little over two months. The treatment helped me very much. There were people there with varying skin disorders seeking help. It was basically a special diet and vitamins. Some of the things I ate most of were carrot soup, with shredded beef on top (we ate that everyday) and camomile tea, yogurt, lots of cream of wheat and feta cheese.
Dr. Kozak raised his own cows and chickens so the meat was made fresh and prepared the way he wanted.
I did very well, and even got a lot of color in my skin. I am half mexican and the only time you can tell, is in one picture I have when I was on the treatment. I will post that picture soon.
My mom tried to keep up with the diet here but you can not prepare beef the same way in the U.S due to FDA inspections. Dr. Kozak suggested she raise her own chickens for me. But my mom went crazy trying to kill the chickens herself. So after a year we gave up.
6 months after our first visit to Spain, we went back for a followup,  where my mom met Lillian Sparks and her son Brian. They were on their way to Mulan Italy to get Brians fingers surgically seperated but Dr. Kozak said he had too much fluid buildup in his hands and advised against having surgery until they got better.
We went back home and just tried to live life. My brother J.J. had been staying with my grandparents while me and my mom were in Spain.
My parents ended up divorcing when I was a toddler but remain close friends. My dad is married with two children, my little brother Ivan (14) and sister Jocelyn (8). They visit about once a year and call every few weeks. My dad loves me with all his heart and despite the language barrier I still know how concerned he is for my health and what a good dad he is. I feel lucky to have a dad like him and a younger brother and sister who love me too.
After the divorce my mom met my step-dad, David, known to me as Daddy. We then all moved to Michigan because Dr. Kozak could not see people in the U.S. but he could in Canada (or so we thought at the time), so we'd be close to Canada, and my dad (David) also had an uncle who could give him a job there.
My brother was not too happy to move to Michigan but I was too young at the time to care where we lived.


MORE TO COME SOON!
THANKS FOR READING!

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This page was last updated on: January 13, 2015
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