As a young person, I was told that I had a rare eye condition called rodmonochromatism, a form of achromatopsia. It is rare but in my family, four out of five of us were legally blind in varying degrees. Then three years ago, my sister and I were invited to participate in a research study at Mass Eye and Ear to hopefully improve our vision by putting some genetic material under our retinas to hopefully stimulate the genes that would activate our cones and perhaps we would see color, have improved visual acuity and better depth perception.
Before we started, I had this inspiration to create Millie, who would help me tell our research story. Meet Millie the rainbow sock monkey. She went to every appointment and then told family and friends how the appointments went.
My sister and I did not experience measurable improvements in our vision, but we are convinced that something happened. Both of us have visibly different vision in each eye now. However, our greatest hope is that the research they are doing with us will benefit younger people. Just the fact the we got to participate in this research project is a dream come true that some day achromatopsia can be treated.
Thanks for letting me share a small part of my vision story.