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I am a mother like many of you; a mother to three amazing children. I have one adult son and two 5 year old children that were adopted from China. One of them we adopted knowing that he had a special need and the other, our daughter Katie Starr, was adopted through China’s non special needs program. Katie was our first adoption and at the time we adopted her, we did not know yet the capacity that we had as a family to deal with special needs. We now realize that we all have special needs; some are just more apparent than others. Our beloved daughter, who we adopted as “Healthy”, has had a myriad of health issues with the most recent diagnosis delivering a sucker punch that we never saw coming. Our Katie Starr was diagnosed last week with Cone-Rod Dystrophy; a hereditary retinal disorder that will rob her of her sight and leave her in darkness. First the cones in her eyes will be destroyed and thus her light and color perception and then the rods will follow which are for night and peripheral vision. We do not have a time line but we understand that the earlier you are diagnosed then the chances are the earlier the sight will ebb away. It is a disease that would have had to have been passed on to her by both of her biological parents as carriers of the gene. I am sure that since they did not have the disease and just carried the gene, it was without any knowledge on their part. It is a rare disease; one of many such retinal disorders that remain without a cure.
Katie's sight issues began at birth but were deteceted almost three years ago, Katie was diagnosed at the age of 2 1/2 with Amblyopia, which is where one eye is significantly weaker than the other. For the past 2 1/2 years we have been patching Katie's good eye on and off, in the hope of strengthening her weak eye. Each time we have patched for a period of time her eyesight improved, only to deteriorate during the months that it remained unpatched.
Two months ago, her eyes had weakened again and our wonderful Doctor, who is also a family friend, told us that we may have to patch again but that they would strengthen her lenses in the meantime in hopes that it would be enough of a fix that she could avoid the patch. We returned a month ago and as we sat and observed the exam, my heart sank. I knew that her eyesight had weakened further. The doctor was quite concerned and he dilated her eyes just to make sure that he was seeing the whole picture. When you dilate a young child's eyes, it is very difficult to really get the kind of visualization of the eye structure that you get with an adult, since they cannot hold the eye positions needed for very long during the examination.
My husband Marc and I had gone to the exam together (in separate cars) since I had to get to work earlier than he did and he was planning to take her to camp straight from the exam. Once the exam went longer than anticipated, I left to get to work asking him to call me the minute that the exam was complete. The minutes ticked by and all of the sudden it was well over an hour since we were together. I knew something was wrong...I just felt it...
When I finally heard Marc's voice my fears were confirmed. The doctor was able to view the periphery of the retina and found evidence as to why Katie is not getting better. Unfortunately, it was not an answer that we wanted to hear. There were flecks of material on the far sides of the retina; yellow in color that led him to believe that she had an incurable eye disease but they needed to have a test run that would confirm his worst fears.
Our doctor referred us to the best eye institute in the country, which is in our own backyard here in South Florida. The doctor who we were referred to is considered to be one of the best retina specialists in the world. Katie was given a test under general anesthesia called an ERG (Electroretinography), which is like an EKG for the eye.
