Hi, we are the Hoffman’s from Ohio. In 2009 at the age of 4, our daughter Olivia was diagnosed with LCA-CRB1. We knew that Olivia struggled with seeing things but just assumed she was going to need glasses. At the first doctor visit, it seemed odd that the doctor actually had Olivia get out of the chair and walk up to the chart to try to read it. Since he couldn’t figure out what was going on we went to a second doctor who then referred us to a specialist who further referred us to the Cleveland Clinic where we finally got our diagnosis. Unfortunately, all the doctor could tell us was that our daughter would continue to lose her vision and that there was no cure. We immediately scoured the internet trying to find as much about this disease as we could and struggled for a couple of years with what to make of it all. We were very happy when we found the Curing Retinal Blindness families during one of our many Google searches.
It has been wonderful to have these families available to help with the struggles and issues that go along with this disease. One of the greatest struggles we had to overcome was figuring out how we were going to tell our little girl that she faced a future without her vision. It was still tough to sit her down and talk to her about it all but seeing what these families were doing to change things made it much easier and definitely helped us to see a better future for our daughter and all of the children in our group.
Since then we have now added fundraising to our already hectic schedules with three children. We are very excited with what this group has been able to accomplish in the short time that we have been with them and can’t wait to see what comes next and even more excited to be a part of it all!!