by Elizabeth

My name is Elizabeth, and this is my story. I'm happy that you're reading it, and I hope that you will be, too.

A year ago in March, I learned that I had a rare spinal disease called Arteriovenous Malformation (AVM). I was 15 years old.

This odd sounding bunch of letters means that I had something like a ball of spaghetti made up of extra veins and arteries.

Wrapped up

This conglomeration had wrapped itself around my spine, and as you can imagine it was choking it. I was particularly scared when I started to have problems walking, all because of the squeeze on my nerves.

Since it's such a rare disease, and because it's usually found in the brain, it was pretty hard for the doctors to figure out what to do about it.

Super glue

They told me that I had to go through some strange procedures called embolizations.

Now I know that this is hard to believe, but here's what happens. The doctors shoot super glue (it comes from France) through a catheter to clot off some of the bad vessels. The scary thing is that they know what vessels they need to straighten out, but they really don't know what might go wrong during the treatment.

Hard work

Unfortunately for me, after my second embolization, I became completely paralyzed from my waist down. Yuck!

After lots of hard work and physical therapy I was able to use a walker, but I still needed more embolizations.

I was really unprepared for the surgery when it was next scheduled because I thought I was in the hospital that time just to take care of some bad pain I was having.

My saviours!

I found out that the operation was scheduled for the next day when an anaesthesiologist (anaesthetist) I didn't even know came to visit me.

Having many different doctors was hard, and they didn't communicate with one another or with me very well. I was scared and confused, crying most of the afternoon.

Then the night shift nurses came on. Thank God, because they were my saviours. Two of them were my particular favourites, and we had a prank war and a pizza party that night. Then some girl talk, a movie, and the night was almost over.

Shock

All of a sudden it hit me what was going to happen that morning. Because of the chance of my being completely paralyzed again, I broke down in tears.

These two great nurses sat down and talked with me seriously and relieved my worries. They gave me wings to fly through the surgery. By the end of our talk I was better.

I went to bed about 5:00 AM. My mother didn't care if I stayed up late because I was going to go under general anaesthesia anyway. I'd get sleep that way!

Meeting the president

Well, the good news was that I had my embolization with no complications.

After three of these procedures, something real cool happened; Starlight Foundation granted my wish to see the president!

I was treated like a princess. I got to see the Joffrey Ballet do the Nutcracker at the Kennedy Center, I went to all the memorials, as well as to the Planet Hollywood and the Hard Rock cafe, and I spent 20 minutes with the President of the United States.

At the end of our meeting an aide said, "I know you want to show her everything on your desk, but you have a cabinet waiting".

Sick

I had a great time in Washington, but on the last day I got sick. What that meant, of course, was that I had to spend Christmas in the hospital in a strange city.

Though I wasn't at that hospital long, I did end up spending most of the spring in a hospital in Atlanta. Definitely a time in my life that I'd rather forget.
The doctors found out that the AVM had grown back, and told us that my only chance was to go to Canada to try some different type of embolization procedure.

I did, and it worked, even though I'm still having nausea spells.

Growing up

I'm a senior now and trying to go to school. I usually make three days out of the week. My close friends have been great. I loved it when they came to visit me. When I came home from the hospital they would even have parties for me.

I have three special guy friends that mean the world to me. I had one person who became friends with me when she found out how serious my medical condition was. Then, when she couldn't take care of me and found out I could take care of myself, she stop coming around. Hard to figure, isn't it?

Regular kid

People should know that I'm just a regular kid who needs special care. I worry about school, the prom and boys. But I also worry about how my body is working, when and where I need to take my medicine, if a place is accessible for me before I go there.

Society is not built for people with disabilities, and people don't understand how hard life is. I hear that we get the good parking places. But we need the extra room to get a wheelchair between the parking places. I hate it when people give me weird looks when I complain something is not wheelchair accessible.

The school is being great about catering to my needs. When I was sick they provided homebound tutoring. I work hard and my goal is to graduate in the top ten percent of my class.

This story may have been edited by Children First for Health for editorial and confidentiality reasons only.

For more help and information:

• AVM Support UK

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