In February of 2017, my 5-year-old son, Malaki, went in for a routine eye exam where we lived in Illinois. When his exam was finished, we were informed that he needed to be referred to a specialist, as something was wrong with the retina of his right eye. As a parent, I became very concerned and worried about what was possibly wrong with my sweet little boy.
A few days later, we were scheduled to see a retina specialist and we were informed that my son had Coats’ Disease in his right eye and his sight was 20/400. We were also informed that his was pretty advanced and he had probably had it for years. He has zero peripheral vision in his right eye and pretty much only sees black. He also has an extremely lazy eye and severe light sensitivity.
In 2017, we moved to Oregon, which is where my son is now seen at Casey Eye Institute. When we thought things could not get worse, we found out Coats’ Disease has affected both of my son’s eyes. and he has also lost the peripheral vision in his left eye and is now near-sighted.
Looking at my son ,who is now eight, you would never know he has visual problems unless you were told. He has adjusted well for the most part, although he does struggle with any games that involve a ball because of his peripheral loss. School is also a challenge because of print, lighting, and even the lines on the paper.
I just want to say if you have an suspicion that something maybe off with your child’s vision – push for answers. My son was too young to explain what was happening to him when it all started, but he is a fighter and he is stronger then ever. Always advocate for your child and be their voice!