Charlie

Our little boy, Charlie, was diagnosed with Coats’ Disease in September 2024 at age 2. I noticed in April 2024 that he was closing his left eye regularly and he was really averse to sunlight. We brought him to our doctor, only to be told that it was a habit that he'd grow out of. I wasn't happy with this so I brought him to an ophthalmologist in May, where we were told that the eye was healthy and were given drops for "dry eyes". Roll on to August, whilst changing Charlie's nappy, I noticed a fleshy substance in his pupil. We brought him straight to emergency of the Dublin Eye and Ear Hospital where they performed an ultrasound. This was the first time that Coats’ Disease was mentioned.

To confirm Coats’ Disease, he had to go under general anesthesia for a thorough eye exam. We were then told that it was in fact Coats’ and Charlie was at Stage 4. Unfortunately the retina had completely detached, the vision was gone and there was no option to recover it.

Que a lot of tears, a lot of Google searches, and a lot of unanswered questions......Could we have done more sooner? Will he have a normal life? Will he lose the eye?

In October, Charlie was in a lot of pain and his eye pressure was at 75 (normal pressure should be between 10 -20). He underwent cyclodiode laser surgery, which dramatically reduced the pressure in his eye. Unfortunately it seems to have done too much and pressure is very low at the moment and the eye has gotten much smaller. It is now looking likely that he will have to get his eye removed and replaced with an artificial eye to ensure his face grows symmetrically. This prospect terrifies me, but we are with a wonderful team of doctors in Temple Street Hospital Dublin who are guiding us through.

We haven't met anyone else with Coats’ Disease or a child this young to have an artificial eye so having websites like the Jack McGovern Coats’ Disease Foundation full of information and stories of real people living with the disease has been a lifesaver for myself and my husband. Charlie has 2 older brothers, aged 9 and 6, so we've been able to explain things easier to them by telling them stories of others with this disease.

Thanks for all the wonderful work you do for bringing awareness to this rare disease.

Mairead, John, Danny, Max and Charlie McGrath in Dublin, Ireland ☘️

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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