Isabel

That's me! Taken at a petting zoo at a nearby Fair.

As you already know, my name is Isabel. But everyone calls me Isy. I was born on October 2nd, 2003, and rather quickly too. Mommy's water broke at 8:30 AM in the bathtub, and she had me at 11:42 AM.

When I was born, mommy was wondering what the mark on my face was, because it looked like a bruise at first. Then the doctor told her that it was a port wine stain. But she didn't care. She was so in love with me that it didn't matter. The rest of me was healthy.

As a precaution, her friend, Andrea, did some research online, and discovered something called Sturge-Weber Syndrome. She then asked the doctor about it at my 2 week check-up. That's when he decided that we should contact a professional in opthamology, because glaucoma was one of the considering factors in SWS.

I've had the pressure in my eyes checked five times already, and all times, the pressure has been good. I get the pressure checked again in a couple of weeks, along with my FOURTH laser treatment.

On June 15th, my doctor set me up for a CT scan to check my brain for any other symptoms of SWS. That came out abnormal, when he discovered that I had some shrinkage on the right side of my brain where my port wine stain extends into my scalp.

On June 28th, we went to La Crosse, where I had a contrast MRI. There, it was discovered that I have Sturge-Weber Syndrome.

My daddy got married to his girlfriend, Candice, on September 1st, 2005 so now I have three stepbrothers.

I go visit my daddy and his new family every weekend. I've been having a hard time at it, because I miss and love my mommy so much. I don't know my daddy very well. But hopefully I'll start doing better soon.

I am receiving physical therapy once a week to help with the hemiparsis on my left side, but I am doing so much better. In a couple of weeks, I'll be having a speech therapist coming to my house too.






To learn about Sturge-Weber Syndrome Click here