“Nadine, Violet has no pupil!” were the words shouted from the living room by my husband, and that was the beginning of our journey. As I ran in to the living room the lamp was shining on to Violet’s face. There was hardly any colour to her iris and no dominant black pupil. We did what most concerned parents do at that stage, and started to google “no iris colour, clear pupil.” I did this all night with the same constant results, Retinoblastoma. My heart sank as I looked for more information. I came across the Know the Glow® site and started looking at pictures I had recently taken. There it was, photo after photo, a shining star in my babies left eye. I knew I had to take action, so the very next day I booked an emergency G.P. appointment.
The day dragged on as we were awaiting the appointment. I couldn’t wait for him to tell me I was an over observant mother and there was nothing wrong. As we sat down and explained what we found, the doctor looked in Violet’s eyes and confirmed there was no red reflex. He didn’t seem concerned, however, and said he would refer us out if we wanted to an optometrist at our local hospital, but that he really didn’t think it was anything.
The referral was done and the next available appointment was 5 months out! I knew I couldn’t wait. As much as I wanted to hear the words, “I don’t think it’s anything,” I had a strong gut feeling that it wasn’t right. I decided to book an appointment with an optician. If anyone knows eyes, it’s them, right? Wrong. They had no idea what was wrong and told me to wait for the referral appointment that was made for Violet. My husband and I knew we could not wait and decided to go straight to Moorfields Eye Hospital, where they diagnosed and referred us on to the Retinoblastoma clinic a week later.
Like most parents our world fell apart that week not knowing what was happening. On February 28th (World Rare Disease Day) our daughter underwent an EUA and was ultimately diagnosed with Coats’ disease stage 3B. She has a detached retina and no sight in her left eye. We are only at the start of her treatment journey, but we have to have faith in the doctors to help Violet. It has also given us a push to start finding out as much information about Coats’ disease to start raising awareness in the U.K. for other families like ours.