For a couple months, Mike and I had been noticing that Jack’s right eye was lazy at times. When I took Jack and one of his sisters to the pediatrician for a physical at the beginning of June 2015, the pediatrician didn’t see anything wrong with Jack’s eye. But he asked me to keep a […]


“My superpower is I can do things with one eye that most people need two for!”-Mighty Maddie One in 20 people will be diagnosed with a rare disease in their lifetime. The majority of rare diseases have no cure, like Coats’ Disease. Maddie was diagnosed right after her 3rd birthday at the University of Chicago […]


I’m a 23 year old female living with Coats’ Disease in my left eye. I have total vision loss in that eye, but to look at me now you would never think that there is anything wrong with my eye! I’ve had Coats’ Disease for as long as I can remember and, as a result, […]


For eight years of my life, I was a happy and healthy child who had the entire world at his fingertips. I played several sports, enjoyed art and music, loved video games, and overall had innate talent in many activities. All of that changed on one cool autumn day. I went for my regular annual […]


  Michael was born in Illinois in 2008 with numerous developmental delays. He was a healthy toddler and although he had always struggled with coordination, his pediatrician performed basic eye exams frequently and found nothing to be of concerning, Michael would eventually grow out of the clumsy stage, but little did anyone know that his […]


My son, Charles,  was diagnosed with Coats’ Disease when he was one year old. He had a pediatrician visit for his one year check up and they did a vision test, which showed his right eye wasn’t aligning correctly. They thought it might be a lazy eye and referred us to a pediatric ophthalmologist, who […]


We are from Johannesburg, South Africa and have a 3-year-old son, Alexander, who was born in August of 2018. When he was born, we noticed his left eye would squint occasionally and we thought that he had a lazy eye, as his dad and Ouma both have lazy eyes. Fast forward to December 2019, we […]


When I was nine years old I started noticing that my left eye was really blurry. My mom took me to the eye doctor and he checked the back of my eye and noticed something unusual going on. He sent me to an ophthalmologist, where they did a lot of tests, eventually finding there were […]


My name is Carrie Hopkins and I am from Hagerstown, Maryland. I was diagnosed with Coats’ Disease when I was just nine years old. I was in the fourth grade when my school performed the standard hearing and vision tests. I first noticed that I couldn’t see the “barn” in my left eye. After a […]


On September 1, 2021, our lives got turned upside down. My husband and I were talking in the morning and we both had mentioned that we were seeing a glow or white light in our 18-month-old son’s eye lately. We knew we had a pediatrician appointment for that afternoon and we figured we would bring […]