Hi, my name is Shaye and I am six years old. From around age three my mum and dad noticed I was a bit wobbly on my feet and was always tripping over. I got sent for hearing tests and occupational therapy (even physio) to rule out any issues that could be causing this. No one ever thought to check my eyes. Just before I was four, my mummy said my one eye was starting to look a little lazy. My mum took me to the GP and he said after shining a light into my eyes that it’s all totally fine. That I have red reflexes in both pupils, so if my sight was that bad I wouldn’t have that. Not to worry. Mum still wasn’t convinced so she booked me into the opticians.
The opticians saw me and said I would need to be seen at my local children’s hospital urgently by an consultant. I had no red reflexes at all and I had no sight in that eye. Within 48 hours I was sat in the eye department of the children’s hospital. They were whizzing me around, making lots of people look at my eye treating me for suspected retinoblastoma. They quickly ruled this out and explained to my mummy and daddy that I have Coats’ Disease. I had total retina detachment and no vision in my Coats’ eye. My specialist explained to my parents that I will never be able to see again with that eye. He told them to look the disease up on the Internet, as it is very rare and they didn’t have a lot of information about it themselves.
Within two weeks, I had my first lot of laser treatment along with cryotherapy. I have had a further two lots of this, along with a fluid drain and an attempt to reattach my retina. My eye has remained stable since then. However it does turn in and I have developed a cataract in my pupil now. I struggle daily with my depth perception and I become very upset when I do trip over or bump into things due to this. I asked my consultant if he could give me a new eye so I know what it would be like to see with two eyes. But he said that couldn’t be done. I always make my mom take pictures to see if I still have my yellow eye (the glow). There is a chance in the future that if my eye becomes to painful or my disease gets unmanageable that I could have to have my eye removed. We have to make sure I protect my good eye now especially during contact sports.
My mum and dad always tell me how brave I am. And how amazing I am for never giving up on trying to do the things I struggle with. We all hope that there will be a cure for people like me in the future.