MALAKI
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!
FAQ
At the Jack McGovern Coats’ Disease Foundation, we are often contacted by anxious parents or patients who are seeking information after receiving a diagnosis of Coats’ Disease. The questions below are provided as a resource to assist you as you and your doctor decide the best approach for treatment. These questions do not constitute any form of medical advice or diagnosis. Each patient is unique. An experienced retinal specialist who has examined the patient is the best source of information for diagnosis and treatment. We always recommend getting a second opinion.
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Ahead of any treatments or procedures, it is important to ask yourself and the doctor the following questions:
How do you know that this is Coats’ Disease?
Has your doctor treated other patients with Coats’ Disease?
Have you sought a second opinion? If not, please consult our Doctor Directory for knowledgeable doctors in your area.
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What Stage of Coats’ Disease is he/she in?
Will his/her vision get worse over time?
Will the eye have pain?
Will his/her eye start to turn out? Is muscle corrective surgery an option?
Are cataracts likely?
How likely is glaucoma? (due to retinal detachment)
Is there calcification?
What is the anticipated disease progression?
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Is there a thorough vision exam available?
Where is the vision affected? (central/peripheral/distance)
Does he/she have depth perception? (3D visibility)
What about the non-Coats’ eye?
To what extent is his/her vision affected?
Will we be able to use this as a baseline to measure progress/decline?
