About Me
My name is Debora Schultz and I am a wife of more than 25 years to my husband Jason, and mother to twin boys, Alex and Jordan. From the time I was little, I knew that blindness was in my family as my grandmother on my mom's side was legally blind. She was my hero. I used to pretend I was blind and walk around the house with my eyes closed to see if I could do it. When my grandfather passed away, she was courageous enough to continue with their dreams, and spent 20 years in a house living by herself while her vision was declining. She passed away in her 90s, still remaining my hero.
My uncle also showed signs of the genetic disease that is carried in our family. This disease is called Retinitis Pigmentosa (RP) and our family carries the dominant form of the gene. This means that you have a 50/50 chance of getting the disease. I knew I may actually have it as well. We had traced it back ten generations in my family. Several relatives who are alive today have the disease, but many others do not have it. With RP1 (our type of RP) you either have it and can pass it on to your children, or you don't have it and cannot pass it on.
Other forms of RP are recessive, meaning that looking back ten generations, you may be the only one to have RP. While I have been preparing for this virtually my whole life, some people have this shocking diagnosis given to them about RP being in their genetic line that they didn't know about. I feel sorry for these people more than myself as they did not have the benefit of knowing this could possibly happen to them.
My goal is to show people that there is life despite this diagnosis. I want to help people to figure out how to navigate their lives, and live their lives as fully as possible. I am NOT going to let RP get me down. I am going to use it to motivate me to do more. Come join me!!