I am so glad that you have decided to visit our web page! My husband and I were devastated when we learned about Ethan's diagnosis. We have come a long way in the last 3 years and have decided that we aren't going to let this beat us down. Building this web site is an important way for us to be able to share our story with others and gain awareness around the globe about retinal diseases. The Foundation Fighting Blindness, which we work closely with, is so close to a cure!! There is even currently a gene therapy being used to help improve and/or prevent vision loss in patients with a disease very similar to Ethan's. We hope that through our endeavors we will be able to raise enough awareness to help fund the research that will someday save Ethan's vision too!
Please feel free to look around and contact me with any questions you may have. We are very open about Ethan's diagnosis!