Jayden

Hi, I’m Jayden! I’m 2 years old. When I was about 1 1/2, around June 2025, my mom started to notice my eye drifting in a little bit. We brought it up to the pediatrician. She said that sometimes kids’ eyes take time to completely adjust, and it might be a lazy eye. She did refer us to a Dayton Children’s eye doctor. Unfortunately, I couldn’t get an appointment until October, but in June, I started having redness in my eye, swelling, and the glow in the eye also appeared. My mom took me to the emergency room because something definitely wasn’t right. They did an exam and told us that they had to send us to the Cincinnati Children’s Hospital. About a week after being seen at Cincinnati Children’s Hospital, I was diagnosed with Coats’ Disease.

Since my diagnosis, I’ve had 8 eye surgeries. We thought my eye would be manageable with treatment, but unfortunately, my retina detached, and they had to remove my lens due to the extensive damage to my eye. After all of this, it was decided that we would need to remove my eye completely.

In February 2026, they did the enucleation. That was followed up by another surgery in April to place an implant. Ultimately, that implant was rejected, and I had to undergo another surgery, including a skin graft using tissue from my belly to put into my eye, with the hope of a better outcome this time. Fortunately, that surgery was successful and, after a couple of months of healing, I was able to get my prosthetic eye!

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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