LIVING WITH STARGARDTS DISEASE

Joseph's Story - written by his Mum

My son’s vision has never been good. Since he was a baby I knew there was a problem. The right eye turned in and he never watched the television. He only seemed focused on thing up close in front of him. Through the years we have used eye patches, vision therapy, anything that different doctors thought may help. We finally decided to have cosmetic surgery to straighten the right eye because nothing we did helped the vision in this eye. He has worn glasses since he was three years old. His vision gradually was getting worse each year sometimes having to go back and get a new prescription for glasses before the year would be up.

Around the Christmas holidays last year he started complaining that his vision seemed to be getting a lot worse. He turned 15 on January 5, 2002. He was very excited to finally be able to go for his learner’s permit for his drivers license. All that changed when the first thing they asked him to do was to perform the vision test and he failed, they had made the letters bigger each time he looked into the monitor until the instructor finally told him to make an appointment with his eye doctor. We went to his doctor the very next day. I knew something was wrong from the very first reading on the eye chart and the look on the doctor’s face. He immediately made an appointment with a specialist at a low vision clinic for the next day. This doctor diagnosed my son with Stargardts that day. We have had a year to get used to the fact that Joseph will have to work very hard for the things he wants to accomplish for the rest of his life. This was supposed to be one of the best times of Joseph’s life needless to say he went through a very depressing time during this last year. When he finally decided that in order to drive he would have to wear glasses that would probably be very funny looking to most people but he could deal with it. We made an appointment back at the low vision center to get the glasses only to get another shock. It usually takes several years to have ones vision go to the very worst but Joseph’s had done this in only a few months he is already at the point it should never get any worse.

We only pray this is the case for him. I am not sure what life holds for him and cannot protect him from everything I have to let him grow up. My only hope is with all that is being researched may be some time in the future he may have a chance to receive an eye transplant to gain vision. I would surely give my eyes to him to have him be able to have a chance to just enjoy things so many of us take for granted. I hope finding this website and him reading of others who are able to have a

Life, career, and family will help him to follow his dreams just as they were before this disease affected his life.

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