DIAZ
It all started back in 2004, when my son Diaz was 4 years old. He was playing with his cousins at my sister’s house and my sister noticed that he was squinting. I didn’t think much about it and scheduled an appointment at the ophthalmologist the following week. During that week, he kept on squinting and I noticed a glow in his left eye just looking at him in certain lighting. That is when I thought that there may be something serious happening with his vision. I was very concerned.
We went to the appointment and as soon as the doctor sat him down and turned off the lights, I knew immediately that some thing was wrong. The doctor quickly turned the lights back on and told me to take him straight to hospital. Diaz was blind in his left eye. We drove straight to hospital and several tests were quickly administered. Ultrasounds, MRI’s, CT scans, yet none of the doctors knew what was wrong with his eye.
The following week, the doctor suggested that we put Diaz to sleep so he can see the back of his eye better. This is an EUA, or an exam under anesthesia. Just a few minutes after that exam, the doctor called me to tell me that Diaz probably had Retinablastoma, cancer of the eye. However, he was not 100% sure of this diagnosis. The not-knowing was devastating! Diaz underwent tests and examinations from August until December of that year. Finally a doctor suggested we fly to Moorefields Hospital in London (we live in Malta). After MRIs and CT Scans at this hospital, we were told the devastating news that there was a small tumor right above his left eye in his frontal lobe. After five months, we were finally told by Moorefields that Diaz has Stage 5 Coats’ Disease. Apparently no one has Coats’ where we live in Malta, Diaz is the first case.
Diaz is now 10years old. We still have to go for MRIs and CT scans just to make sure that this tumor stays the same size. He often has severe head aches which are probably caused by this small tumor. Overall, he is doing very well with just having vision in one eye. I want to share my story to help spread awareness of the “Glow.” I want other families to understand that this sign in their flash photography can mean so much more. I am very grateful that even though I was not aware of the glow, I knew to get him the care he needed.
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?
