Isaiah’s Story

Posted on 2016-04-13

My son, Isaiah, was diagnosed with Coats’ Disease in his left eye when he was 5-years-old. It all started with a picture taken from my best friend’s cell phone camera. She took a picture of Isaiah and her daughter, and she showed me the pictures immediately. She said, “Becky, look at Isaiah’s eye. I took these at different angles as well.” What she was showing me was “The Glow.”

I happened to have an eye appointment for myself the next month. When I showed my doctor the photos, he wanted to get Isaiah in the next day. Dr. Nicholas and his father, who is also an eye doctor, checked him out the following day. They were wonderful with Isaiah and said we need to go see a specialist, so they sent us to one in our town that same day. The specialist checked him out and said he was fairly certain it was Coats’ Disease. He told us he wanted to send us to a pediatric specialist and that he knew a great one in Oklahoma City. So he made a call and got us in right away with Dr. Collinge at Dean McGee Eye Institute. We went to see her a couple of days later, and sure enough, it was Coats’.

It was pretty heartbreaking to see Isaiah go through all of the eye exams and to see his reaction when he had to cover his “good eye.” He didn’t know he couldn’t see out of his left eye, and he looked terrified. But over time he has learned how to “cheat” and use his peripheral vision on the eye exams. That is actually good. He is learning how to use what sight he does have in that eye. Isaiah has no central vision.

Isaiah’s first procedure was done a few weeks after we first saw Dr. Collinge. His eye was already leaking pretty bad, and she did not want to wait any longer; he had the cryogenic treatment done. He did well for a few months and then had more leaking, so we had another cryogenic treatment. This time he was good for about a year. Our latest treatments were the injection, which we did first, then two weeks later, we did another cryogenic treatment. The doctor is hoping the combination of the two will help the treatment take better. We find out soon how the procedure turned out. Hopefully this is the last one for a while.

Isaiah does not let this hold him back at all. He is very active in sports. We just make sure he wears his protective glasses at all times. I’m so glad to have found other families affected by “The Glow,” because Isaiah did not like taking pictures and hated looking at himself in the pictures because of his eye. We told him he is special and has a super power in that eye, which made him feel so much better. I have also been showing him the other kids, and that makes him feel better as well. We are blessed he has his good eye and so thankful for an amazing kid and family. I’m also glad to become a part of the Coats’ families. Be blessed everyone!