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Hi, I'm Nava and I'm 13 years old.  I was born with something called Beckwith Weidemann Syndrome (BWS). When I was still a baby, I had two operations to correct problems associated with it. One was to repair a hernia of my navel. Another was to remove excess tissue from my tongue. My mom told me that my tongue was so swollen that I had to be fed with a spoon for a few months while other babies were breast feeding or drinking from bottles. 

My third ( and I hope last) surgery was in December, 1998,  to correct a discrepancy in the length of my legs. One of my legs was growing faster than the other, so the orthopedic doctor operated to slow down the growth in my left leg by drilling out some of the bone cartilage.

I did my science fair project on BWS and learned that it is a rare genetic defect found on chromosome 11p15.5, occuring once in every 14,000 births. It carries with it a whole hodgepodge of symptoms, the scariest being an increased risk of cancer.  Kids like me are 1000 times more likely to get cancer than you are. I am screened for tumors every year, and so far, I'm OK. Because  the treatment for cancer seems to me to be much worse than the disease itself, it's pretty frightening to realize that my chance of getting it is so high.

My tongue is still pretty thick and somewhat hard to control. A lot of people tease me about the way I talk. When I try to tell them to stop they just repeat what I tell them. Often it makes me go as far as swearing which gets me in trouble. For example if I tell them to shut up, they just repeat "shoth up," Sometimes it makes me feel like never talking again. But then I remind myself about the time I won the public speaking contest and about the time I made everyone laugh when I did a comedy act in the talent show. 

I have four friends that I usually hang out with: Amanda, Jenny, Linda and Anna. We usually just sit somewhere and talk. My closest friend Mindy moved, but we still keep in touch with letters and phone calls. Mindy can really talk! My hobbies include hockey, computer games, the net, music, reading, soccer, basketball, and talking. I have a nineteen year old brother, Meethy, and I've got to say that he is an ideal brother. 

Though I don't really like hospitals, in the Hospital for Sick Children in Toronto (HSC), you get your own room with a T.V., a bathroom, a telephone, drawers, a couch, windows with shades, and an extra bed for one parent. HSC has a lot of areas designed for play. I even got to meet the Maple Leafs there once.

I am fortunate for many things.  I haven't gotten any tumors yet, all my surgeries went well (I received blood for the two in 1986, and luckily none of it was contaminated), and I have friends, a nice family, and plenty of achievements. What more could I ask for? I have been to hospital many times and when I see how badly other children are suffering. I forget all about my own misfortunes. Someday I want to become a pediatric geneticist. 

For those of you who have medical differences, I give this advice about teasing: It's natural for kids to make fun of things that they do not know about. You should educate them about your illness and prove that it is really nothing to laugh about.

See ya around. Thanks for visiting my page! Nava

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

Last updated: November 14, 2004