Right now, our family is going through one of those unexpected difficult times.
Lynk has always had problems with his eyesight. He got his first pair of glasses at 3 years old. We thought he just had bad eyesight, something that's normal, easily corrected with lenses. And the lenses did help. With them, he could see amazingly well.
But during the Fourth of July this year, we noticed something wasn't right. We had been in Atwood, lighting off fireworks. Specifically, we were lighting off parachutes. They were the kind of firework that sends a small cardboard pellet attached to a tiny red paper parachute high into the air, to come gently floating down for small children to catch.
Myck, Jayden, Raeth, and Thorin were having a blast running after them. But we noticed that Lynk just looked confused, not chasing after the parachutes like his brother and cousins. After lighting off several parachutes, we told the kids to go see how many they could find. After looking around a bit, Lynk came up to me, opened his hand and said, "Mommy, are these what we're looking for?" He was holding a handful of cigarette butts.
We all very suddenly realized he could not see the parachutes. That was the moment we knew something wasn't right. The next day, I scheduled an appointment with the local optometrist. I was hoping that Lynk just needed his glasses prescription tweaked, no big deal.
After asking Lynk to read the eye chart on the wall, and looking into his eyes with a bright light, Dr. Wahlmeier had Lynk do a color test, the kind where there is a number written in red dots among a field of green dots. After the examination, Dr. Wahlmeier looked at me and instead of saying, oh, he just needs his prescription changed, he told me that Lynk needed to see a specialist. It turned out that Dr. Wahlmeier had seen spots on Lynk's macula, the back part of the eye. Spots that should not have been there. Spots that were causing Lynk to have a color deficiency, and that he was seeing with a visual acuity of 20/40, even with glasses.
Dr. Wahlmeier suspected that Lynk had something called Stargardt's Disease. He advised us to see a pediatric ophthalmologist as soon as possible. So, after several calls with insurance, we ended up with an appointment to see Dr. Bardorf at the Children's Eye Physicians in Denver.
The appointment with Dr. Bardorf wasn't conclusive. Dr. Bardorf also suspected that Lynk had Stargardt's, but that he couldn't be sure, and said we needed to see a retinal specialist to be sure. He suggested that Lynk may need additional testing in order to confirm a diagnoses. But since we were in the process of moving from Alaska to Georgia, we decided to wait until we got to Georgia to have Lynk seen by anyone else.
Once in Georgia, one of the first things we did was to get Lynk a referral to the only retinal specialist in Columbus, Dr. Emanuel Wilkes. Dr. Wilkes took one look into Lynk's dilated eyes with a bright light and said, "Yup, it's Stargardt's". He then looked at me, said very matter of factly, "There's not treatment, no cure, and I'll see you guys in a year. You want a second opinion, then go to Emory." That's it. No information on Stargardt's, no prognossis, no information on research being done to treat this incurable disease. Nothing. But at least we had a diagnoses.
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