Helena's Story: Living with Leber Congenital Amaurosis (LCA)

Helena is a young artist living in Southeastern Connecticut who thought her vision loss was stable, until she entered middle school and noticed that her vision was getting worse.
She and her mother, Shanda, tell their story of seeking a diagnosis and struggling with uncertainty and feelings of isolation that accompany blindness and undiagnosed retinal disease.
Their hope is that some day doctors will be able to tell Helena why her vision is decreasing - that she will have a genetic diagnosis, and with that the possibility of a future treatment to save her sight.

[@pauliereed5756]

You are such an inspiration. I am so proud of you. I feel frustration for you. I feel hope for you. Thank you for sharing this. Please keep me in the loop. Ms. Paulie