Last year during a school physical, I got a letter in the mail that Trystn failed his eye test in one eye, mainly stating that it was a little lazy. We didn’t have health insurance at the time, and I did see it as a big deal. Well, I was on Facebook and a friend of mine shared a post about the glow. My heart sank. It had been several months since I had received the letter and I saw that glow in his eye.
Finding an ophthalmologist to even look at him was impossible. I finally found one this August! They said he was fine until they checked his retina and immediately sent us to a specialist in New Orleans, who then sent us to St. Jude. They thought it was retinoblastoma and it was the hardest week of our lives! Then being told it wasn’t cancer (thankfully!) and that it’s Coats’ Disease. I had never heard of this before and we didn’t know what to expect. I searched for doctors all in Louisiana and couldn’t find one! At that point, I was freaking out, wondering what’s going to happen to my baby?!
We found a doctor out of Houston and he has been a blessing to our family. Trystn has had two surgeries and so far they have helped tremendously, however, we have a very long road to go. He is in the third stage of Coats’ Disease borderline 3b and he has a lot of scar tissue causing the retina to not reattach.
Trystn looks like a normal kid and is very brave! He normally doesn’t let his eye bring him down. Sometimes it bothers him a lot but it’s mainly because he doesn’t understand, being that he just turned 5. I know he will do great things, even with one good eye.