Nicky's EB Info World ~ Featured EB patient: Andrew

Hello, my name is Andrew Jordan. I am almost three years old and I have recessive dystrophic Epidermolysis Bullosa. I was born at Irwin Army Hospital, Fort Riley, Kansas. I weighed 7 lbs 13 oz. and I was 21 inches long. When I was born the nurses washed the skin off my left foot, right hand and right thigh. I had a few small blisters on my face.

The doctors didn't know for sure what was wrong with me but my mommy and her parents were pretty sure they knew what the problem was. You see, my granddaddy and my Aunt Sarah have EB too but only on their hands and feet. So they sent me to see a specialist in Denver when I was 5 days old. My mommy and daddy went and both sets of my grandparents. Everybody kept hoping that there was way to fix me but the doctor said that there was nothing that could be done and it was never going to go away. They did a biopsy by rubbing an eraser on my foot until it made a blister and then cut the skin off the blister so they could test it.

They also told my family about things they said were going to happen to me. They said I would probably be blind, deaf and mentally retarded and I would never grow to be very tall. Everything sounded pretty hopeless. One doctor at Fort Riley told my mommy and nanny not to feed me if my mouth was sore. When Nanny asked him if he meant for them to starve me to death, he said it would be the kindest thing to do. Fortunately, Mommy and Nanny didn't listen to any of those people. You see, they didn't know them very well. Instead of scaring them off, it just made them more determined that I would not just survive but that I would prove them all wrong. Because my mouth was so sore, I wouldn't suck on a bottle so they fed me with a dropper. They wrapped each one of my fingers and toes individually so they wouldn't grow together. And even though it was very expensive, they fed me Pediasure and used Mepitel to keep my bandages from sticking.
Both my mommy and daddy were in the Army when I was born but my mommy got out so that she could take care of me full time. She became my doctor and nurse. When I was 6 weeks old, the Army moved us to Walter Reed Hospital in Washington DC. Mommy soon found out that the doctors there didn't know much about EB either. There was another little boy there who had EB too but he had Junctional Herlitz and only lived to be 6 months old. That made my Mommy even more determined that I would do well. Sometimes when a child is born who needs extra help, it is very hard on the mommy and daddy and they get so caught up in what has to be done that they forget to love each other. That is what happened to my mommy and daddy. Mommy was so busy and tired all the time and Daddy couldn't understand why she was so convinced that she could do what the doctors said was impossible. So when I was 6 months old, Mommy and I went to live with my Nanny, Granddaddy and Aunt Sarah. We made a very rare household, the EBers actually outnumbered the non EBers.
When I was born, the big toe on my left foot was curled under my foot. When I was 1 1/2 I was taken to Delaware so they could fix my toe. They fixed it and used a skin graft from the front of my left thigh to cover it. They put a big pin in my toe with a ball on the end of it. I was fascinated by it all but I hated getting the bandages changed. Yuck! But hey, I had a big toe. After a couple of weeks, they took the pin out and almost right away my toe started to go back to the way it was. Mommy and Nanny took me to see Jo David Fine in North Carolina and he said there was nothing to be done. He also said that using the wrapping method would not stop my toe from curling more. He said that as long as I didn't complain about it (I was 1 1/2, what was he expecting me to have to say about it!) my foot should be left alone. So Mommy and Nanny decided that he was just another doctor and could just kiss off. Now we are waiting for them to perfect the CCS skin so they can try to fix my toe again without a skin graft as the skin on my thigh has never completely healed.

A year ago, Mommy and I got our own apartment. I still see Nanny and Granddaddy almost every day and I spend the weekend a couple of times a month. Back in September, my cousin Brian came to live with us so I have a big brother now. I like having a big brother even though he tries to beat me up sometimes. It is nice to have somebody else my size around and he comes home from school each day and teaches me what he has learned. I know my shapes and numbers up to 15 and I can spell Brian's name (sure hope they teach him how to spell my name soon!) Brian is pretty cool and he understands about my EB and tries to help me. He even holds my hand sometimes when I have a poopy attack. Or he will cheer me on singing " Come on Andrew, you can do it!"

So far, life has been pretty good. I am a little slower at some of the physical stuff but I get there. I can run now and I am learning to jump (I can finally get both feet off the floor at once!) and I can ride my tricycle. I am trying to learn to use the potty. Some days, I do a good job and others - oh well, I try. I have a very positive attitude and everybody says I am such a happy little guy (at 40 inches tall, I don't know why they keep calling me little) A lot of it comes from my Mommy and Nanny. They say I have to be like everybody else and obey the rules and stuff like that. I have to put away my toys and say please and thank you. If I don't act nice, I have to stand in the corner just like Brian and boy do we hate standing in the corner. I don't think much about having EB, it is just a part of my life, not all of it. Sometimes I get sad when people I don't know say ugly things about me (like the little girl who asked me why my hands are so ugly) but Nanny and Mommy tell me not to worry. There are so many people who love me and don't care that I don't have fingernails (actually, I think I am lucky not to have them because Brian sure fusses when they cut his) or that I get bubbles all the time. Sure it takes longer for me to take a bath but that just means I get more time alone with Mommy or Nanny. And Granddaddy and Aunt Sarah show me their bubbles so I don't fell like I am the only one. Someday, I hope they find a way to fix my skin so I don't get so many boo boos. Nanny tells me there are a lot of people working on it and I hope they do it soon. Until then, I guess I will just keep on growing and learning and being Andrew !!

Playing: You've got a friend in me from Toy Story
Be Brave. Even if you're not, pretend to be. No one can tell the difference.
Website maintained and graphics by Sleeping Angel Creations & Services