Gio

Last year, Gio and I traveled to Ecuador to visit family. One day, while watching TV, my aunt noticed that his left eye was drifting upwards. As his mom, I had taken countless photos of him, yet I had never noticed his eye moving upward or the yellow glow we were about to discover.

In October 2024, back in Hawaii where we live, we went for Gio’s yearly health checkup. I mentioned to his pediatrician that his eye had been drifting upwards. He referred us to a pediatric ophthalmologist, who immediately noticed the glow in his eye. Concerned, she scheduled an exam under anesthesia (EUA), preparing us for the possibility that one of the main causes of an eye glow is retinoblastoma.

Within a month, we consulted multiple specialists. One doctor in Ecuador recommended that we see Dr. Carol Shields at Wills Eye Hospital in Philadelphia. After another exam under anesthesia and a month-long wait, we finally received the diagnosis: bilateral Coats’ Disease. Dr. Shields found the disease in both eyes, but miraculously, his right eye was intact and was treated immediately with cryotherapy. His left eye, though affected in the retina center, still retains peripheral vision. We are grateful that the disease was discovered at an early stage.

After Thanksgiving, Gio returned to his routine and flew back to Hawaii. He is growing fast and loves having fun—swimming, watching his favorite shows, going to the beach, and playing with his friends at school. He is now preparing for a second round of treatment, keeping faith that God’s plans are perfect and trusting in the intercession of St. Jude Thaddeus, who has been with us throughout this journey.

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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