(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.
For more on the Sofia Sees Hope Organization, you can visit their website.
