When my daughter turned five-years-old, I had scheduled her a yearly check-up with her pediatrician. Just like every year Cienna appeared to be very healthy. I had no concerns for her health. The only thing that the doctor felt she needed was an eye exam for glasses because she read the vision chart at 20/40 that day. So I scheduled her an appointment with a local optometrist.
As the eye doctor was examining Cienna she asked me if Cienna had been playing with make-up at sometime that day. I said no. Why? She said she saw something that looked like glitter in her corneas. She had never seen anything like that before and was unsure what was in her cornea. The eye doctor referred us to see an ophthalmologist. So off we went to see a pediatric ophthalmologist.
The ophthalmologist was not sure what was in her corneas either. The doctor decided to reach out to other doctors via her list served. It took a week or so to get a response but a doctor responded and suggested to have Cienna’s kidneys tested through bloodwork.
When the results came in I was told by the opthalmologist that Cienna had cystinosis. I was terrified! I had never heard of this condition and I feared for my daughter’s future. Our next step was to see pediatric nephrologists at Penn State Hershey Hospital. So off we went and met with those doctors. After several different tests and exams Cienna was offically diagnosed with a rare form of cystinosis. Cienna is now seven-years-old and in second grade. She is doing great. She takes medicine every six hours and eye drops every 1-2 hours. She has become quite good at putting her eyedrops in herself!
I thank God every day that Cienna has an astigimatisim. If it were not for her needing glasses we would not have caught this and been able to treat it before it severly damaged her organs and eyes.