Daniel’s Story – sent in by Melisa, Daniel’s mom
Daniel is a 10 year old boy. He was diagnosed with Stargardts in September of 2004. I first took Daniel to the hospital emergency room about a year ago. They examined his eyes because he had a fever. When the nurse examined him, she said “Wow! this kid can’t see”. She then advised me to have an eye Dr. check him out. At our 1st appointment they had a difficult time prescribing him a glass fit for him. Later, about 4 months, we took him back in because the glasses were not helping at all. The Dr. couldn’t figure it out, so he referred him to a pediatric opthamologist. It was then they sent him for a angioretinalgram and the eye then showed some areas that didn’t light up as supposed to. This Dr. then sent him for a electroretinalgram at the University of Illinois, in Chicago. It was there where we were told that Daniel’s vision was decreasing and that he for sure had Stargardts. Daniel has had a lot of support in school. He now is meeting with a low vision itinerant. She will be helping Dan accept and move forward as well as seeing what his needs are. He seems to not be accepting that he has this problem and is very embarrassed that the teachers all know. He says “Mom now I am a nerd”. How do you reassure him that he is normal? He doesn’t like the extra attention (although he loves to be the center of attention). It has been difficult as a parent, not really understanding what he can and cannot see. I appreciate all of your strength, to be able to talk openly about this disease and your willingness to help others. As we find out more we will update our letter and try to search for all your help. May God be with every one of you and keep you strong!
Thanks, Melisa, Daniel’s mom