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Brandy from Ohio

Brandy’s Story

I, too, could not see the board at school at age 12. My parents took me to the doctor. At first they said it was too much homework, that my eyes were just tired, then they said it was psycological. They then said it was something that had come disconnected from my eyes to my brain and they wanted to do brain surgery. Thank God my Dad kept going for one more opinions. Finally the diagnosis Stargardts. It took a year to get it right and I was already 20/400 and have never driven a car. I was a straight A student until then. There was not much help for me in school and the teachers didn’t understand if I didn’t need a cane, how come I could see. I never made it out of 9th grade.

Now I am 32, married and have 4 children. I live around cows and horses. My husband takes me everywhere along with my sisters. I do all my shopping in the mail . I have had to lie my way into every job I have ever had because every time I put I was legally blind, I was never hired. But as long as I can get my foot in the door and just prove I can do the job, no-one has had a problem with my eyes. I hope my story will help someone and good luck to all of you. By the way, we can’t find anyone else in my family who had Stargardts.

Hopefully this will help people with children: I have taught my children from early on that Mom can’t see very well so there are a few rules that other children might not have. For example, when we are at the pool or playground if i call their name they are to not only say “here i am”, but they also have to wave their arm. I always try to make a mental note as to what colors they are wearing but, if other children have on the same colors with blonde hair then I can’t tell which child is mine. So I make them wave so I know. Another example is, I let them know I am about to run the vacuum cleaner. They know to get all of their things off of the floor or they will be sucked up in the vacuum and I will not get it out.

In stores they are to stay with me and not wander off, but just in case I make mental note of what they and my husband are wearing so that I can find them by their colors. I know my husband’s walk and so I can find him, and I know the sound of our engine on our car so I can find it. I have also taught my husband to flash his lights at me. I still walk past people I know and don’t recognize them but my oldest friends remember that I can’t see them so they always yell my name and wave. I just thought these hints would help someone with children.

Because we can’t find anyone with Stargardts other than me in our family, I always wondered if it could be a birth defect from something my father might have come in contact with in Vietnam. I was the first born of six kids. Just a thought. Hope this helps.

Brandy from Ohio