Our story is a bit unique, Fisher was born healthy and was reaching milestones as expected. Around his 1st birthday Fisher saw the eye doctor for the 1st time. The doctor did notice Fisher left eye was weaker then his right, so Fisher was prescribed glasses and we were told his vision would be fine. Fisher continued to see an eye dr yearly, and everything seemed to be moving along as normal. It was in the 1st grade that we noticed Fisher couldn’t find the line to write on when doing his homework. This was concerning because writing on the line was something he was able to do in Kindergarden. We immediately made an eye doctors appointment, and due to work my husband and mom took Fisher to the appointment. It was at that appointment the doctor indicated something was wrong. Fisher wasn’t able to follow the pencil with his eyes, and the doctor felt he might have a learning disability so he wanted to see us again after 8 weeks. It was at that appointment the Dr said Fisher vision had gotten worse, and we were going to need to see a specialist. I went home and made an eye appointment for Fisher, at the Children’s Hospital in Chicago. I figured there we would get answers and help correct his vision, but I was wrong. The eye dr knew after the initial eye examine that things didn’t look good for Fisher. The doctor scheduled an ERG, this is like the EKG test they do on the heart. The ERG tests the electro activity in the eye, and give the doctors the information needed for a diagnosis. We waited 2 months for the test, and I will never forget that day. I will never forget holding my childs head down while they placed contacts in his eyes that had wires connected to them. I cried the entire 45 minutes the proceedure took, never taking my hands off Fishers head. After the test we took Fish to pick out a new pair of shoes, and then back in the car to head home. It was during the car ride home that I got the phone call from the doctor. She told me the test was complete ,and that Fishers eyes didn’t respond (the electro activity was flat). She then explained that Fisher had Retinis Pigmentosa, and was legally blind. My questions of what do we do next, was quickly squashed by the doctors comments of “There is nothing we can do at this time.”. We continued home not realizing the changes that were to come…..
