(WTNH) — At the age of 2, Sofia’s parents knew something was wrong. She was falling and tripping, a diagnosis told them their daughter had Leber’s Congential Amorrosis or L.C.A.

It is very rare, and those who have this disease will lose their sight completely. Sofia’s Mom, Laura Manfre, of Ledyard, hopes to educate more people about LCA and to talk about the non-profit she formed to help raise money for research to wipe out this disease and let children see again.

“It’s shocking, you don’t want it, and there is a certain sense of hopelessness especially when we first received the diagnosis and didn’t think there was anything we could do so when we realized that there are things we can do, we can help fund some of this early stage and these small research projects, how could I not do it and we’ve been so lucky to get so much support from the community, ‘Dinner in the Dark’ and business and individuals, I don’t think I could stop if I wanted too.” said Manfre.

“Dinner in the Dark” is an event in which guests are given a menu that is in braille, so that they can can get some insight on what it is not to have any sight.

Members of the community are excited to see a different type of fundraiser come to the area. Stephen Coan, President and CEO of Sea Research Foundation comments, “Dinner in the Dark is one of the most creative events to come into our area in a long time. It promises to be a fun, engaging event, and also deeply meaningful and impactful. This event is an opportunity to remind ourselves of the power of sight while helping to find a solution and cure for visual impairment.”

David Williams, CEO and President of Make-A-Wish America and Advisory Board Member of Sofia Sees Hope, comments, “Imagine growing up without full sight and the knowledge that you will be blind before adulthood.  Now we have a chance to change this.  Sofia Sees Hope is bringing awareness and resources to make a real difference for these kids.”