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Adam’s Story – Written by his Mom

Adam just turned 12 and was diagnosed with Stargardt’s when he was 11. He had just gotten new glasses (which he’d been wearing for about a year before) a few months before he started complaining of not being able to see the clock and the board at school. His last exam had been in Octobor and when I took him back in March, his optometrist saw the spots on his macula. He was first checked to make sure he wasn’t a diabetic (which he isn’t) and then referred to a pediatric ophthalmologist. Dr. Cascairo has been wonderful. He took one look at Adam’s eyes (which are a beautiful sky-blue) and told me he was pretty sure about the diagnosis. He tested 20/100 and 20/70 at that time. He went for the ERG and visual field tests which were suggestive of Stargardt’s and/or cone dystrophy. By the end of this year, his vision has progressed to 20/400 in the right eye and 20/200 in the left eye. He is a wonderful kid with a great sense of humor and has seemed to handle all of this really well. His only worry at first was not being able to drive, he wants to be a police officer. As the year progressed and so did his vision loss, his grades have dropped and we are considering homeschooling at this point. He is in the 6th grade and has a great group of friends. We live in a small town, so mobility hasn’t been a big issue yet, although he has taken a few falls in the shadows and at night. He loves playing his saxophone and before we were able to get his Ocu-Tech glasses, we had his band music blown up to 18 x 24 size and I had to go over each note with a permanent marker so they would stand out on the pages!! The Ocu-Techs have been a God-send in this regard, as he can see the music a lot better though still large print. He has a lot of difficulties with reading his assignments and the school has been slow in being able to get education on low vision, as he is the only student they have ever had with this problem.

He loves gadgets and toys, so he has really been excited about the low vision aids, although we didn’t have any success with magnifiers. He loves the computer and we have the ZoomText software for him. He would really enjoy talking with others with Stargardt’s, as he is isolated in this. We have him taking the I-Cap supplements and his doctor is researching for any treatment or supplement that may help. We would enjoy hearing from anyone who would like to contact us. This past year has been a whirlwind and we are finally at the point of looking into his future instead of dwelling on the day-to-day accommodations we have to make! He has such a great attitude. When we were asked if there was nothing that could be done for this disease, he said, “Yes, we can pray.” He has accepted the fact that if God does not heal him, there is a greater purpose for him having this disease that only He knows. I have enjoyed this site and hope to hear from others.