About Sage

Me, myself and I...Sage
Hi, everybody! My name is Sage, and I live in Chicago with my daddy, my mama, and my brother Jude. I am four years old (in 2003), and my brother Jude is even younger. Jude doesn't know how to talk yet, but Betsy the speech therapist is trying to help him learn. Jude is funny and he laughs a lot. Sometimes I feel left out because he always needs a lot of help, and most of the time, I don't. When he pushes me, I know he wants to play, but I don't like the way he asks one bit! You should just see him when he dances, he is so funny. He likes the movie Thomas the Tank Engine, but he wants to watch it all the time, which can also get annoying. 

I like to do many things, like play outside, watch movies, ride my bike, and build with big Legos. You might  be wondering if I have any medical problems...well, I do. I have something that I call 'special blood' and grown-ups call Von Willebrand's Disease, a certain form of hemophilia. Because of this, I have to wear a helmet when I am outside, even when I'm not riding a bike! My 'special blood' doesn't know how to clot like yours does. So when I get a cut or a scrape or a bruise, the bleeding just goes on and on, unless I take some medicine in my nose. This medicine works to help my blood clot like it is supposed to, but it burns my nose for awhile. I don't like to take it because of this. The one good thing about the medicine is that though I may not have any water afterwards, I'm allowed to have juice...and even Kool Aid (my favorite!)

If I hit my head when I'm playing, my mama has to call Dr. Valentino, and I have to have a special x-ray called a CT scan (it sounds like 'cat' scan, but there are absolutely no cats allowed in it). This is a type of a test where I have to lie still in a tube, which is a little bit scary, but don't worry, I am very brave, and the test is over after awhile. 

My friends think my helmet is cool, but I think it makes my head sweat. Whenever I get hurt, the bruises take a very long time to go away. They look to me like ugly spots!

Sometimes my mama and daddy let me stay up late with them, and Jude has to go to bed (see, there are some good things about being four-years-old, too!). We eat popcorn and watch movies and have an overnight on the futon couch which turns into a bed. Some other times my daddy and I have special time after Jude is asleep. 

Audrey works at Dr. Valentino's office and she is nice. She gives me prizes when I get shots. I don't like shots; they hurt more than a mosquito bite, so don't let anybody tell you differently!

Having special blood feels bad some of the time, but it doesn't bother me most of the time. I can still run fast, but I am still scared of the jungle gym, since it is way too high for me and I don't want get bumped when I drop down. Like the time I fell off a slide and got a big cut on my chin. I had to go to the hospital that time, and you might not believe this, but they used special glue to fix the cut on my chin.

My friends think having this 'special blood' is fun because I get to miss school and wear a cool helmet, but it is not. It is more like having a lot of owies, and they take too long to go away.

Remember that even though I have special blood, I am strong and brave and I can do lots of thing. If you remember that, I will be happy! Thanks for visiting my page on the World Wide Web!

More about hemophilia

My Mom's story

To the frog ponds
To send Sage a note
To the site map

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

Last updated: November 14,2004