Stargardt's Disease

Stargardt's Disease is also known as Stargardt's Macular Dystrophy, or juvenile macular degeneration. It is a degenerative, genetic disease. This means that both Tyson and I are carriers of this disease, and Lynk got the unlucky combination from both of us. The disease is all about having a messed up gene that would normally get rid of something called liposfuscin in the eyes. But since Lynk's genes don't work right, the lipofuscin is just allowed to build up, which is really bad for his vision. More information on what exactly Stargardt's is can be found here.


The prognosis of Stargardt's isn't good. People who have it do tend to retain their peripheral vision, but their central vision deteriorates. They can become colorblind, and their world becomes blurrier and blurrier. Most people end up with vision somewhere between 20/200 and 20/400. Having vision of 20/200 means that someone meets the clinical definition of being legally blind.

Shortly after Lynk was diagnosed, we took him to the optometrist's office to have his vision checked. The news there wasn't good. In July, Lynk had a visual acuity of 20/40. By the end of September, it had deteriorated to 20/250. Lynk has never complained once about his vision. He's never told us that things were blurrier than normal, or that he was having trouble seeing. We had noticed that he had to put his face closer to book in order to read, but we didn't think much of it. We didn't know that in a few short months, our little boy had become legally blind.

Hearing an optometrist tell you that your six year old son is legally blind is one of the most heartbreaking things. I hurt so much for him, especially because I can't wave a magic wand and give him his eyesight back. To his credit, Lynk doesn't really know what's going on. He has never asked why his eyes are bad. He's never asked why it's so hard for him to see things. He is such an amazing trooper. He just takes everything in stride. He knows that his eyes are sick. But he doesn't know he has something called Stargardt's Disease, or that he's legally blind. I don't want him to feel like he's being labeled. I don't want him to feel different. And I'm going to do everything I can to make sure he has as normal a childhood as I can give him.

Because he has Stargardt's, and is legally blind, we are trying to work with insurance to get an approval for Lynk to be seen at the Emory Eye Center in Atlanta. The Emory Center is one of the leading eye care centers in the U.S. It's a teaching hospital, so everyone there is constantly learning new things, they have state-of-the art equipment, cutting edge technology, and they're the ones who will have information about the research being done to find a treatment for Stargardt's.

Emory also has a low vision clinic. Once we have the referral authorization to go there, Lynk will be evaluated by a low vision optometrist, who will let us know what visual aids Lynk will need, the severity of his low vision, and I'm not even sure what else. We will know much more about what is going on once we are able to get to Emory and have him evaluated there.