Jamie

My son Jamie’s story began in January 2026, when a routine eye screening at school revealed that he was unable to see properly out of his left eye. I was advised to schedule a full eye exam as soon as possible.

On February 14, I took Jamie for an eye test, where we were told there appeared to be a “scar” in his left eye. Doctors initially suspected toxocariasis, but an MRI was needed to rule out retinoblastoma. The MRI results came back inconclusive, and doctors still could not determine whether it was retinoblastoma.

In the meantime, blood tests ruled out toxocariasis, and Jamie then underwent a CT scan to further investigate the possibility of retinoblastoma. After two very long and stressful weeks, we finally received the news that retinoblastoma had been ruled out.

During this time, I had also scheduled an appointment with the only consultant ophthalmologist in our area who specializes in children. As soon as he examined Jamie’s eye, he was able to diagnose him with Coats’ Disease.

On May 19, Jamie underwent laser PRP treatment. At the moment, the vision in his left eye is very limited. While I don’t know what the future holds, Jamie has handled everything with incredible strength and bravery. To date, he continues to face this journey like an absolute champ.

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.

Questions to Ask Your Doctor (Download PDF)

  • 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.

    • 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?

    • 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?

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