Hank
When we took Hank to his one-year wellness appointment, we expected it to be just another routine checkup. Instead, his pediatrician told us there were abnormal readings on his vision screening and referred us to a pediatric ophthalmologist. At the time, we had no idea that moment would begin a journey that would change our lives forever.
At the ophthalmologist appointment, the doctor told us he suspected Hank might have something called Coats’ Disease and that we needed to see a retina specialist right away. Suddenly, we found ourselves facing more referrals, more tests, and more uncertainty than we could have imagined. Those in-between moments — waiting for appointments, waiting for answers — were incredibly difficult. We tried to stay away from “Dr. Google,” but the anxiety and fear of the unknown were overwhelming at times.
When Hank was just 18 months old, he underwent an examination under anesthesia (EUA), where he was officially diagnosed with Coats’ Disease in his right eye.
Somewhere along the way, we found the Jack McGovern Coats’ Disease Foundation, and I truly don’t know what we would have done without that support. The Foundation helped us understand the disease, prepare questions for specialists, and feel less alone as we navigated one procedure after another.
Since his diagnosis, Hank has undergone somewhere around 12 procedures, including EUAs, laser treatments, cryotherapy, and injections. Even now, our journey is continuing. We are currently preparing for cataract surgery that developed as a result of the treatments needed to fight the Coats’ Disease. Every stage of this journey has required us to adapt, learn, and keep moving forward.
Through it all, Hank amazes us every single day. He knows he has a “bad eye” and a “good eye,” but beyond that, he doesn’t let Coats’ Disease slow him down one bit. He is joyful, brave, resilient, and full of life.
This journey has not been easy, but we are so thankful for the specialists who care for Hank and for the support we found through the Foundation when we needed it most. Knowing there is a community walking beside us has made all the difference.
We are still in this fight — and Hank continues to show us what strength really looks like.
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?
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