Zachary at a Mets game


I'm happy that you've stopped by for a visit. My name is Zachary, I live in Connecticut, and I'm 12-years-old. You can probably tell that I'm a Mets fan. Not only is my bedroom practically a Mets gallery; I've been lucky enough to meet some great baseball players, too. Meeting people is one of my favorite things to do, and when you get to actually talk with players like Mike Piazza, well, things don't get much better! I have to say that what drives me the craziest is when the Mets lose more than one game in a week.

Since I want to go to culinary school when I get older, I'd like to meet Emeril next, so Emeril, if you're reading this, send me a note! When I finish school, I might also be a stage manager for my sister, since she's quite an actress. But she's not the only one...I've had a little experience performing, myself. In fact, last year I got to host a gala put on by "Dream Come True" (an organization that granted a wish to me...and to one of my sisters...). The most amazing thing about having our wishes coming true was that my whole family was able to participate and go on trips with us.

Here's a picture of me at the gala in my hosting tuxedo!

You might want to know about my family. I have two sisters, and of course my Mom and Dad. Stephanie is 13-years-old, and Ashley is 16.  I know that they both love me, but I also know that they sometimes yell at me and kick me out of their rooms. Privacy, you know... Together, we've gotten to go on some great trips.

You might also want to know what it's like to grow up with a condition I have called neurofibromatosis (nf). I can say the word, but spelling it is too much. What it boils down to is tumors, or lumps, that grow in my brain. Since these tumors take up space, they cause all sorts of problems. For instance, I can't open one of my eyes, and I can't hear from one of my ears. My mom says that God works in mysterious ways, because even though I can't see on the right side, I can hear on that side, and even though I can't hear on my left side, I can see over there. One of the tumors is growing on my right side, so we're hoping that I can get an auditory brain stem implant to protect my hearing on that side. At least I'm not alone with all of this. My dad has nf, too, and so does Ashley.

I just had a fourth operation on my head to remove one of eight tumors up there, and this time, the doctors were really worried that I might not be able to see at all as a result of the surgery. Thank God I can!!! I've also had 4 radiation procedures to shrink some of the other tumors. Not too bad a time, except that the radiation made me feel pretty tired.

When I was in first grade I had another sort of operation to correct some problems in my heart, but that part of my body is OK now! Since I've obviously had a lot of experience in hospitals, I've learned that the nurses and doctors are cool, but I frankly get tired of all the medical appointments. Wouldn't you? I made a bet with my doctor that if I wasn't discharged from the hospital in twenty-four hours, he would owe me $5.00. Lucky for him that I made it home on time. Lucky for me, too. I certainly prefer home to the hospital!

Now about school. Well, for starters, 6th grade is great fun. My favorite subjects are science and math, but I really like all of my classes. The teachers are the best...they make learning very interesting, and they care about me a lot, I guess because I'm a careable sort of guy, and I never yell at people. My mom says I have a great sense of humor, too, so I have many friends, some  good enough to tell about the medical things happening to me. They find it all very interesting. 

When people do stare at me (because one of my eyes is totally closed off), I just stare right back at them. I give them the 'stink eye', and they stop staring, immediately. Hey, maybe it will work for you! 

My mom with me in the hospital

And here I am with my student nurse, Kim

Thanks a lot for visiting my page. Zachary

Want to learn more about nf

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College
Bronx, New York, 10468

Last updated: November 13, 2004