Shane’s Journey Through the Eyes of His Mother
Shane’s journey with Coats' Disease began when he was just three years old, a typical, lively boy with boundless energy. He was the kind of child who would lose himself in the world of cars, action figures, and endless games with his older brother. But there was something that didn’t feel quite right.
Shane’s right eye would occasionally turn outward, a subtle shift that no one noticed at first. It wasn’t constant—just an occasional drift that seemed almost like a quirk. Still, for Shane's mother, Megan, there was an unsettling feeling in her gut. As a mother, you trust that instinct and she knew something was off.
One afternoon, Megan and Shane went out for lunch. A simple moment—just the two of them, sharing a meal. But when Megan sent a picture of Shane to her husband, something caught her eye. In the image, Shane’s right eye was turned outward in a way that was hard to ignore. It was more than a fleeting moment; it was a distinct shift, something wasn't right.
That moment marked a turning point. The doubt, the sense that something wasn’t right, suddenly became undeniable. Without hesitation, Megan called the eye doctor. Something was wrong, and it was time to find out what.
Little did they know, this was just the beginning of a path that would change their lives forever.
At our initial visit with Dr. Davis, and after exams and imaging of his eyes, she told me "I think this is Coats' Disease. I want Shane to see a Retina Specialist as soon as possible." I had never heard of the disease before; I was scared and nervous as to what was going on with my son. But Dr. Davis was great - she sat by me, took out her personal cell phone, and texted the images of Shane’s eye to Dr. Shapiro, our Coats’ doctor. With her help, we were able to get Shane to see him the very next day.
Once we met with Dr. Shapiro, Shane’s diagnosis was confirmed, and he wanted to get him in for laser surgery as soon as possible. By the following week, we were in the hospital having the laser procedure done. As of today, the laser surgery has worked well. The leaking blood vessels have stopped and no other surgeries have been needed as of yet. We do know that he will likely need more done in the future, as we continue to monitor this disease for the rest of Shane's life.
Shane's Coats' Disease impacts his central vision, so he will never have great vision in that eye. But if we don't continue to try and use what vision he does have, through patching and eye drops, he may never gain any of that vision back. Through all of this, Shane has been an absolute trooper - a true Coats' Warrior!
Tell us about learning of Shane's Coats' Disease
What drew you to the Jack McGovern Coats’ Disease Foundation?
I was initially drawn to the Jack McGovern Coats' Disease Foundation through people I met. When I told my sister, a nurse, about Shane’s diagnosis, she mentioned it to other nurses at the hospital she works. To our surprise, there was a nurse who had a family member with the same disease, and she put me in contact with her. This disease is so rare, that is was a true Godsend that I was able to connect with someone so soon to discuss the disease! This mom was the first person to make me feel comfort, relief, and overall understood. She told me about the Jack McGovern’s Coats’ Disease Foundation, and I immediately went to the website.
This Foundation makes you feel less alone. It makes you feel like there is hope and, that together, us Coats' parents, patients, and family members can help make a difference and find a cure - which is why I wanted to be a part of it! I joined their Coats' Ambassador Network (CAN) so that I could start to attend meetings and hopefully start a fundraiser for Coats’. The CAN is important to me, because there are so many other parents out there who reach out to you and help support you. There are meetings held to discuss important topics, and there are several people who have amazing fundraisers setup
that I can’t wait to gain more insight and knowledge from! Without the Jack McGovern Coats' Disease Foundation, I don’t know where I’d be on this journey!
How Has the Jack McGovern Coats' Disease Foundation helped your family?
The Foundation has helped my family by simply supporting us. One particular moment I point to is when I saw my son’s sweet face on their website and Instagram page. I was immediately brought to tears. I felt so much support and love from people I haven’t even met simply from sharing our story. It showed how much they care about each and every patient - and how important it is to keep spreading awareness and sharing our stories. The Foundation is something I am truly very thankful for
Find your people. Find the ones that make you feel supported, the ones that you can talk to about this disease and get advice or guidance from. We need people who understand and people who have been there. This disease is rare, but you don’t have to feel alone. Join the Foundation, follow their social media pages, be LOUD about advocating! We can all do our part to help find the cure!
Final Thoughts?
Time is Running Out to Give in 2024!
Your tax-deductible donation will allow us to continue providing support, hope, and resources to Shane, his family, and others.
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?
