Houston Chapter Featured Volunteer

Georgi’s Stargardt Stars
By Brenna Thiem

4During the summer of 2006, it was time for the kid’s annual eye exams. We always knew Georgi couldn’t see well, but we could have never imagined what was to come. As a parent in the medical profession, I was well aware of that gazing look that I received from Georgi’s pediatric ophthalmologist. She said “something is wrong” in this very calm voice as her eyes started to tear up. Something was different this time; Georgi presented with a bull’s-eye macula which is one of the clinical manifestations of Stargardt disease.

I think I speak for all parents when I say we can handle anything except the inability to fix what is broken with our children. Do you know that feeling in your throat that is so thick you feel as if you cannot swallow — that feeling of heaviness in your heart, crying so hard your head feels as if it will explode? That briefly describes how we felt on August 17, 2007. It was very difficult for me to accept the clinical diagnosis as concrete, therefore, Georgi, her father and I sent off for the genetic testing.

1On February 18, 2008, we received an ophthalmic molecular report confirming that the patient’s mother’s DNA (C583) contains the IVS28+5 G>T change and the father’s DNA (C582) contains the Arg 681Stop change, therefore, the patient’s molecular diagnosis of Stargardt macular degeneration is confirmed. It was this day we decided to face this together, and accept this as a chapter in Georgi’s story. This is not the ending to her story but the beginning of her journey in finding a cure for her disease.

Look at our daughter and read the following words from her mouth. We request that you get involved with the Houston VisionWalk or our chapter and let’s make a difference together...

  • I am at my brother’s baseball game and can’t see the score board to tell who is winning.
  • I am still at the baseball game and want a Frito pie. I can’t read the sign with the prices so I will have to ask.
  • I am walking up the bleachers with my Frito pie and missed a step and fell from the 4th bleacher onto concrete and gravel. I just didn’t see the step.
  • Now it’s getting dark, the baseball game is almost over. Where is mom? I don’t see her. There she is, she must have been in one of my blind spots.
  • It’s been raining, we are driving and mom is saying look guys do you see that rainbow? I just say “yes,” but I cannot see it. God promised to never flood the earth again and I know God will hear my healing prayers. I know God hears me.
  • Wow, it is my first week of school. I love my school and my new teacher. She treats us like we are so big because we are in third grade now. I took my clip and headed to the restroom and realized once I was there, I could not remember how to get back. 2It was only the second day of school. What should I do? I am so embarrassed. So I waited and waited, finally someone came to the restroom and they helped me find my new classroom. My teacher fixed this, now we always buddy up. It doesn’t take me long, my eyes may be bad but my memory is almost perfect. Once I remember something it sticks and I won’t forget!
  • I get tired of mom throwing a fit if I don’t wear sunglasses outside. She said it may make my eye disease worse.
  • I have a really good teacher, counselor, pal and vision teachers and I get a lot of special attention. I like that but it scares me. What is going to happen? How much more will I not be able to see? Will this stop?
  • My name is Georgi and my mom has told you all about me. Please join us to find a cure, donate your time, money or support. It will help all of us!
  • My parents say, “We don’t have time to waste. I don’t want her tomorrow to be a memory of what she was once able to see but a vision of what she will see.”